Having lost friends, co-workers, and a lover, Shane Sawick, to AIDS, I am all too acutely aware of the personal impact the disease has had on my life. Coming of age during the height of the epidemic, my experiences in HIV education and activism fundamentally shaped me, forever altering my very core.
However, in the years since, the media has largely ignored the disease, as have many in the LGBT community. This veil of silence is both odd and frightening, ignoring the impact the disease had on an entire generation and relegating gay and lesbian people, once again, to a place of shame.
As June 5, 2013, marks the 32nd year since the first report of the disease which would go on to be known as AIDS, I was curious as to the toll the disease has taken on others.
I reached out to both those who directly faced the onslaught, as well as those younger who have never known a world without AIDS, to find out how 32 years of HIV/AIDS has impacted their lives.
Here are 32 voices, on the 32nd year of AIDS.
“Becoming sexually active in the early ‘90s was a scary time. AIDS was widespread, but safe sex education was spreading too. I learned how to protect myself. And I did. I am concerned that today’s youth, especially gay youth, think that if they contract HIV/AIDS they can ‘just take some pills’ and everything will be okay.
“Safe sex education must continue and be more encompassing than billboards that oversimplify contracting HIV/AIDS by showing a bottle of pills as a ‘prescription’ to fighting the disease.”
— Tuc Watkins, actor (Desperate Housewives, One Life to Live)
“It has been almost 25 years since my diagnosis of being HIV positive. At the time, the only drug available was AZT, which was to be taken as 2 pills, every four hours, around the clock, which was not conducive to a good night’s rest when training for the Olympics! I survived another battle ten years later, when I thought I was saying good-bye to my friends and family. I was wasting away to almost nothing, boarding a plane to go thousands of miles from my home, checking into a hospital under an assumed name. I didn’t claim it on my insurance, as I was fearful of anyone knowing my diagnosis.
“Today, my life couldn’t be more exciting. HIV has given me perspective, pushing me to not put off my passions. Now, in my 50s, I’ve taken up trapeze, and look forward to both an incredible scuba diving trip next year and a sky dive this year. The fact is I live ‘with’ a virus called HIV; it is a part of me, at times challenging, but those questions of how or why are irrelevant. I have been incredibly blessed to have had such support after telling the world my status. Yes, I have my haters, but I give them as little energy as possible. No one truly knows how long we have, so I have chosen a joyous and happy life!”
— Greg Louganis, author and four-time gold medal Olympian
“Coming out into the AIDS epidemic made it all the harder to come to terms with one’s sexuality. To live in an embattled community facing oppression and discrimination as well as annihilation was overwhelming and often infuriating. I developed an enormous regard for my community through ACT UP, Queer Nation and the many service organizations that mushroomed up to deal heroically with the crisis. I worked at a hospice through many of those years and treasure the love, brotherhood, and community I saw there. We grew up politically, spiritually, socially, we found out who are friends were. AIDS was a teacher in many ways, and when I could stay in my heart, I’d find it could teach me.
“It was a hard teacher, a tough love thing, but it politicized me and woke me up in so many ways that I’ve done volunteer, community, and progressive political work ever since. Of course, oftentimes the loss was overwhelmingly sad, reminding us to live in the now, and love one another fiercely and fully. And to always remember those we lost, and to honor them by strengthening our community and keeping our hearts open and strong and just.”
— Trebor Healey, two-time Ferro-Grumley award-winning author (A Horse Called Sorrow, Through It Came Bright Colors)
“I never wanted to become positive and tried to avoid it. My father-in-law died of AIDS in 1984. I had a sister-in-law who was positive and who has since died. But a crystal meth binge got me one night. Thank goodness the meds today make it possible to one day see my grandchildren and to be undetectable for the right guy. We’re learning too slowly, but we are learning! One clean and sober day at a time.”
— Steven Fales, actor and playwright (Confessions of a Mormon Boy)
“I’m 48, have been ‘out’ since the age of 18, and had many acquaintances and friends who, in the mid-1980s and late 1980s and even early 1990s, got sick and died. Only a few were close friends, and it saddens and horrifies me that they’re no longer here. But what really saddens and horrifies me isn’t personal loss: it’s our country’s loss. Our world’s loss. So much talent, so much verve, so much humor, so much mischief, so much generosity: all gone.
“For me the legacy of AIDS—which, I hasten to point out, is still with us, not to be overlooked or belittled—is an awareness of how unpredictably and mercilessly the future can disappear, how randomly disease can strike, and also how dangerous and shortsighted it is for people themselves and for society in general not to confront public health threats immediately, vigorously, honestly and without denial or prejudice. The sadness that sticks with me is less about the friends gone than about the revelation of human and societal shortcomings.”
“I cannot tell you how many tears I have cried with friends upon learning they had tested positive. Back then, we just assumed that HIV was a death sentence. For many it was, but for others, it was actually the start of a brand new—albeit challenging—life. I thank God for the progress we’ve made, but when I meet young people whose attitude is ‘I’ll just take a pill for the rest of my life,’ it scares me. It’s 2013 and I still have the same message I had 25 years ago: SAFE SEX.”
— Jackie Beat, entertainer
“The disease began to touch those I knew and loved: a wonderful actor, a brilliant jack of all trades, a former student who was so handsome and full of life, a young dancer friend from A Chorus Line… Their commonality was not only the arts, it was youth. They were all too young with too much to live for and too much to share. Suddenly, because I knew these guys, every death after hammered my heart; hammered by complete strangers. I cursed God a little, but I became more open to everyone, not just my personal circle of friends. And I still think it is just so damned unfair.”
— Robert Michael Morris, playwright, actor (Running Wilde, The Comeback)
“From the beginning, the community fielded the horror of AIDS with a mixture of shock, grief, denial, terror, and rage that not nearly enough was being done about it by the powers that be. As the community was devastated, many of the survivors became politicized and created a culture that by now has become legendary in its power and impact. Decades later, AIDS is still there and still devastating, and we’re going through all the same emotions about it, but we’ve learned through our battle scars and emerged with a lot of fight in us, which helps as we demand equal rights in marriage, the military, and everywhere else.”
— Michael Musto, author, former columnist, Village Voice
“In 2009, I lost my husband, Antonio Vaccaro. He was 38. He was the person I thought I’d be with for the rest of my life. I was shattered. It happened suddenly. It was unexpected. Nobody thought that anyone would die of AIDS in 2009. But he did. And people do. I thought I’d gotten used to loss, having lived through the ’80s and ’90s, and going to memorials and funerals every Saturday for years.
“Having seen my community destroyed and decimated. But you never get used to it. It’s never easy. Antonio was the hardest. He was my strength, and it was taken away, and I’ve had to learn how to survive and be strong on my own. I’ve been forced to find my strength again, but I will never again find my innocence, or ever really feel completely safe. And then there’s the underlying sadness continually shocking you, threatening the happiness.”
— Michael Vaccaro, actor (Child of the ‘70s, Deleted Scenes, The Endless Possibility of Sky)
“I was listening to a portable radio as I strolled to my high school to pick up my diploma just two weeks after graduation in 1981. To me, the world was about to finally open up when I heard the announcement of a new disease that appeared to be affecting gay men. At that moment, I knew life ahead would be changed. I entered UCLA that fall and would soon find myself visiting friends between classes as they were hospitalized in the AIDS ward. Illness and funerals became commonplace. There seemed to be only three emotions: fear, compassion, and grief. And, it was like the majority of the outside world didn’t care.
“Those were my early adult years. I could say the toll was the loss of friends, devastation to my community, and the hopes for the future. But, this crisis didn’t defeat us; it made us (and me specifically) more determined. Those who suffered and passed experienced the biggest toll—as did the world that lost their talent and loving spirits.”
— Dr. Greg Cason, psychologist, star of Bravo’s LA Shrinks
“One of my greatest joys was rewriting the ‘Ty’ monologue when I adapted my stage play Sordid Lives to film. In the play, the character talked of a friend who died because of AIDS. In the movie, I added a line because of the new meds that gave hope to so many.
“As I’ve watched the evolution of the AIDS epidemic, I think of all the amazing plays, films and television shows which addressed and chronicled the evolution of this epidemic. I think of the groundbreaking television film An Early Frost and the education that art has given this epidemic. Later, we, the writers of Queer As Folk, were able to tell more stories that addressed those living with HIV and AIDS. I hope I live to see the film that chronicles the discovery of the cure—when the last chapter of the HIV/AIDS epidemic is written in life and in our art.”
— Del Shores, playwright (Sordid Lives, Southern Baptist Sissies)
“Of course I’m delighted that new drugs have largely stopped making AIDS a death sentence. But to see young people who apparently think of these drugs as a cure is horrifying. HIV transmission is treated casually—or even as inevitable—and I don’t understand my friends who are getting tested every few months. Doesn’t that prove that they aren’t practicing safe sex? We do know how to prevent HIV transmission, so why aren’t we doing it? Are we even talking about AIDS enough?
“One young friend of mine didn’t even know that the disease can have a decade-long incubation period during which symptoms don’t show. The younger generation didn’t watch their friends waste away as my generation did, so they don’t know the horrors first hand. Infections are up among youth as they actively seek out barebacking. And it saddens me that looks-obsessed gay men may have come to the conclusion that there isn’t much point in living until you’re old and no longer desirable. I hope we are more than that and, as the great Larry Kramer points out, we should value each other’s humanity more. We aren’t just pieces of meat with an expiration date after which we become trolls. We’re supposed to be a community.”
— Lady Bunny, DJ, entertainer, founder of Wigstock
“As a young gay man, the history of the gay movement and the AIDS epidemic helped to make me who I am and create the identity that I live by today. Hearing the stories of friends who are HIV-positive, as well as reading the works of Paul Monette and Larry Kramer, who were pioneers in spreading the word about the crisis, inspired me to become an activist. I am so thankful to them for informing me and making me a better human being as a result. We should do everything we can to ensure that other gay youth are aware of our community’s history; we can never forget our brothers we lost.”
— James Duke Mason, activist, actor (Disappear Here)
“What’s the toll? On a personal level, it’s the dear friends and associates lost to AIDS. I still miss them—Philip Labhart, Mike Ward, and others. There’s also the toll of seeing a tragic reversal of direction that healthcare policy has taken in our society. U.S. healthcare puts us 37th on the list, behind EU countries with universal healthcare.
“Indeed, the U.S. is taking better care of poverty-stricken PWAs in Africa than we are taking of our own poverty-stricken citizens who live with HIV/AIDS. That could be the final toll of AIDS—the people who die not because of the virus itself, but because they couldn’t afford or access the current treatment.”
— Patricia Nell Warren, author (The Front Runner, My West), columnist (Bilerico Project, Arts & Understanding)
“As a gay man in his late 20’s, the AIDS epidemic has always been a sort of looming dark shadow over my life and the lives of my friends. We are the generation once removed from the initial horror of the epidemic. So, instead of taking charge, we have begun to avoid the topic all together. Now, it’s time to recommit to the conversation and stop being afraid of the dark.”
— Tyler Curry, writer, activist
“AIDS destroyed the body of Thomas Montgomery, my very first lover. His ashes are scattered over Mt. Hood in Oregon. I still cry when I think of his untimely death. The real horror and heartbreak of AIDS can only be grasped one death at a time. I’m grateful for the meds that keep other close friends alive. I’m just hoping that those ‘miraculous’ meds won’t deceive any more of our bright and beautiful young men into taking unnecessary chances. I am too old to watch another generation grow sick and die…one good friend at a time.”
— Reverend Mel White, author of Stranger at the Gate: to be Gay and Christian in America and the co-founder of Soulforce
“To be honest, fighting AIDS is often depressing and exhausting. Many of us walked away, or have taken long breaks from the work. When we talk of the glory and beauty in this fight, it’s the communal response that we’re talking about, not AIDS itself. AIDS is horrible, and relentless. In the same way HIV will kill you if you ignore your infection, HIV will damage a community’s health if the community ignores it.
“With over 30,000 new infections in gay men each year in this country, mostly in young gay men, where’s our communal response now? I feel blessed to have witnessed ACT UP’s glory years. With today’s assimilationist politics, I doubt I’ll ever witness that same sense of community again. But I hate sounding like some grumpy old activist. I’m not. Truth be told, there’s much to admire in today’s LGBT youth. I have no doubt they’ll make their mark.”
— Peter Staley, activist (featured in the Oscar-nominated documentary How to Survive a Plague); founder & advisory editor, AIDSmeds
“The challenge for me has been to try to find a way to grieve for things that had still to happen, that were yet to come. I have a friend who, after a vivid dinner or conversation, says ‘Well, we just made a memory.’ How many memories were not made because the friends I was planning to make them with never got the chance to make them? Can you make a new memory around an absence? I think I’ve tried to do that, with many friends who are gone. They know who they are.”
— Richard Kramer, novelist (These Things Happen)
“Having moved to the Bay Area for college in the 90s, when ACT UP’s ‘SILENCE = DEATH’ campaign was ubiquitous, much of my gay identity was forged in the Castro. By then, the gay community had already organized to fight AIDS, people knew how the disease was transmitted, and the focus had shifted from panic and death-sentences to prevention, education and early detection.
“But that didn’t change the fact that AIDS was inescapable if you were a man who slept with men. I knew to get tested every six months and I knew that blood and semen were to be avoided at all costs. I knew that condoms were nonnegotiable. I lived through being young and gay in the Castro in the 90s because others had dedicated their lives to finding out and then teaching me how to protect myself.”
— Darryl Stephens, actor (Noah’s Arc), author, vocalist
“I have resisted this question for almost 30 years; just run from it, never really looking it square in the face. I have indeed let AIDS alter my life without debate. Seeing hundreds perish from a plague, then dealing with the bureaucracy that came with organization, has been close to defeating—though not quite. AIDS impacted my life in almost every way possible. How to live and love, without a doubt. I truly hate all that it has done, yet would not change a moment of my participation in the war.”
“My most vivid memory of the beginning of the AIDS epidemic is of the level of ignorance about it among both gay and straight people. Two examples: my friend Luis arguing with me about safe sex, which he claimed was a conspiracy by heterosexuals to stop gay men from fucking. Luis later died. And at an early demonstration against the Reagan Administration, I was approached by a straight woman who wanted to know what the protest was about. ‘AIDS,’ I replied. She looked puzzled and asked, ‘The diet candy?’ (Ayds was an appetite suppressant candy popular in the ‘70s and early ‘80s.) This was in 1984. And then the real nightmare began.”
— Michael Nava, five-time Lambda Literary award-winning author
“I didn’t realize how closely I had brushed up against the plague until we were well into it. While Gaetan Dugas was often referred to as Patient Zero, my wonderful Yale roommate Enno Poersch was designated Patient One years after his death, and his boyfriend, Nick Rock, Patient Two. By then, I had sat by numerous hospital beds, held dozens of hands gone cold, and attended too many memorials to count.
“The most searing memory, however, is of the day my dear friend Vito Russo called to tell me of his diagnosis. The news wrecked me. ‘Now I have a terrible favor to ask,’ he said. He couldn’t bear to tell our mutual friend, Craig Zadan, with whom he was extremely close; would I? Of course, I did. And Craig and I wept together–not just for Vito, but for all the loved ones who had gone before and those we had yet to lose. At the time, I couldn’t imagine I would ever be called upon again to deliver as devastating and heartbreaking a message. But, of course, I was. And I did.”
— Dean Pitchford, songwriter & screenwriter (Footloose), author
“I remember an ugly time in America when good people, kind people, people of all religions, faiths and beliefs turned their backs on their sick and dying children because they had ‘that’ disease. I remember going to the hospital to visit sick friends, but there was no hospital bed for them. You would often find them laid out on a gurney, pushed up against a wall out in some hallway, unattended and dying for help. But there was no help for them.
“Because I can never forget, I continue to do the divinely inspired victoriously aware DIVA work that I do. I founded the DIVA Foundation 23 years ago as a living breathing memorial to the many friends I lost to AIDS, and we have simply dared to care after all these years. Simply dared to raise our voices in song and commitment to fight the good fight against HIV/AIDS because I remember when the disease had no name.”
— Sheryl Lee Ralph, actress, founder of DIVAS Simply Singing and the DIVA Foundation
“I exist at that weird nexus of being too young to have personally seen the devastation of the 1980s but too old to be ignorant how HIV/AIDS had decimated a huge part of the LGBT landscape. I remember being 15 years old and reading And the Band Played On, all the while thinking, ‘Why did this happen?!?’ Only after I came out did I realize that my real question was, ‘Why did this happen to my people?’ My personal goal is, as it has ever been, to remind people and myself that, in some ways, we’re still where we were and have an absurdly long way to go.”
— Ken Schneck, producer/host, This Show Is So Gay
“I recently participated in AIDS Walk 2013. I first did the AIDS Walk in 1987. As I walked, I thought about all my friends, all my peers who didn’t get to be 30, or 40, or now 50. I felt the hole in my spirit that remains for each one of them even decades later. I thought about Scott, who built tree forts with me. I thought about the unspoken teenage attraction between us. I thought about our coming out to each other and his shortly-thereafter death. I thought about the life he might have had and the stories, dreams, disappointments and victories we may have shared. Instead, there’s a place-marker… and a deep gratitude for his having been here. In between—there is just space where our friendship may have been. That’s the biggest toll. Space, where there might have been more of what we were together.”
— Charles Perez, speaker, writer, former ABC anchorman/reporter
“Moving to NYC in the late 80s, one of my first jobs was working for a cleaning service operated by a gay couple. I watched as the illness took over one of them until he was no longer able to perform his job. That was the start of attending funeral after funeral. Losing friends throughout the years was terrible in itself, but many gay men also spent those decades wondering ‘will it be me?’ or ‘why am I still here?’ Any survivor of a war, epidemic, or disaster has that guilt.”
— Gregory G. Allen, author (Well With My Soul)
“It has made me even more passionate to educate our young and stand up for human rights.”
— Judith Light, Emmy and Tony award-winning actress, activist
“It was the death of innocence in many ways. The toll it took was being stripped of your support system. I could look through my phone book and see 20, 30, 40 people dead within a year. My partner died after we had been together 17 years. He died just as I was elected to the Board of Supervisors. If losing people wasn’t bad enough, we were mistreated in death. EMTs would sometimes not pick up the body or treat it disrespectfully. It taught you to fight. It informs who you are for the rest of your life. Even now when someone dies, it brings it all back. You think of it all the time.”
“It would be so easy to list out the devastating losses I’ve experienced since the dawn of the AIDS epidemic, including, to a certain extent, the loss of my own youth. I could talk about the endless memorial services, the hands held in hospital rooms, the many ways people near and dear to me were stopped cold in their tracks. To do so, however, would be to give too much power to a teensy weensy virus and to play the victim card.
“Instead, I prefer to think about the toll I’ve taken on AIDS. I’ve kinda kicked its ass. I’ve thrived and have sent the message, ‘You do that to my friends and my family, and you’re gonna have to deal with me!’ I may lose this battle, but not without a knockdown, drag-out, Dynasty-level throw-down-in-the-fountain catfight!”
— Glenn Gaylord, director (I Do, Eating Out 3: All You Can Eat), screenwriter/producer/lyricist (Leave It On the Floor)
“To comprehend the impact AIDS has had on my life you need only make a list of all of your friends, lovers, acquaintances, and coworkers. List them randomly as they come to mind until you reach 100. Then circle every third name. Imagine each of those circled, within a year or two, withering into an ancient, decaying, stinking bone heap. Not all of them at once but overlapping, several at a time, over a decade. Imagine the light leaving their eyes, the joy leaving their hearts, the music leaving their soul. Imagine which of them you would embrace as they took their last desperate breath. Imagine at what point on the list you could no longer do so. Imagine looking back twenty years later and wondering what life would have been like otherwise. Imagine wondering each day why you were not one of those names circled on the list.”
— Tyler St. Mark, writer, publisher, a creator of one of the first AIDS awareness campaigns (Mother Cares, featuring Zelda Rubinstein)
“AIDS took away any excuse I might have had to live dishonestly. AIDS took away my fear of being found out, my fear of the critical eye and my fear of taking control of who I might become. AIDS will never return the stolen friends. AIDS will never return the stolen lovers. And AIDS will never allow us to think of our bodies as our own. AIDS took too much from too many and what it left was a version of me, and a version of us, and a version of our world that is better prepared. And yet, I wish it never existed at all.”
— Mayor Pro Tempore John D’Amico, City of West Hollywood
Shane Michael Sawick was an actor and coordinator of the Southern California AIDS Hotline, and the partner of this article’s author, novelist Kergan Edwards-Stout.
Learn more about the life of Shane Sawick here.
Kergan Edwards-Stout’s debut novel about one man’s battle with AIDS, Songs for the New Depression, was winner of the 2012 Next Generation Indie Book Award in the LGBTQ category, shortlisted for the Independent Literary Awards and named one of the Top Books of 2012 by Out in Print, among others.