Katja Heinemann

THE GRAYING OF AIDS: – graying of AIDS | portraits

Thanks to advances in medical treatment, people are living longer with HIV. As of 2015, half of those living with the virus in the United States are estimated to be over the age of 50. As the population of older Americans at risk for—or living with—HIV/AIDS grows, the daily realities and challenges of their lives remain largely invisible in our youth-oriented culture. 

The Graying of AIDS, a collaboration with health educator and writer Naomi Schegloff, MPH, is a web documentary and educational campaign based on portraits, video and oral histories of long-term survivors and older adults who contracted HIV later in life. Combined with HIV/AIDS public health tools, it aims to increase awareness, sensitivity, and collaboration among care-giving professionals.  

Project website 

Op ed in POZ Magazine 

TIME LightBox feature and the original 2006 essay in Time Magazine (paywall) 

  • It’s not something that God throws down at you because you did something wrong.
  • I feel very guilty. I’m a very religious person. I pray every day and I feel that in my prayer I have to mention the names. I mention seventy names every day but there are hundreds of others who died. We lost magnificent people. Don’t know what the world would have been like if we had these people and had all the wonderful things they had to offer us. We don’t have to lose those beautiful people today, because we have the drugs to hold them.
  • Years ago people had eighteen to twenty four months, and today people are here for fifteen, twenty years. I get wonderful support, and it's what helps to keep me alive. Alive twenty-five years after being diagnosed.
  • I look at him now, I feel so bad. Because I remember the vibrant Thomas, not the Thomas that can’t hardly get up. He’s all skin and bones, and it hurts me just to see how skinny he is.
  • The doctor told me back in 1990, he said, “At the end, it’ll attack your organs.” My kidneys are gone, my liver is shot. And my heart ain’t worth two cents. It’s like every day you wake up, somebody chopping a little piece off your body. Somebody chopping another little piece. At the end, you ain’t got no more pieces left. But I go on and I say I take one day at a time – but each day go past, it gets worse instead of better.
  • What is she gonna do when I’m gone? How will she survive?
  • Rosalia: Sometimes I worry, even if he gets like a flu, or when he’s fatigued: he have a condition, Rosalia, sooner or later maybe something can happen. Maybe not, maybe he can be very good for many, many years. And I hope that’s the way it’s gonna be – but I do worry.
  • I wasn’t ready to face the death of the HIV.  The way they were dying, how they turned almost like skeletons. I wanted to make my own choice of how I wanted to go. I kinda destroyed my life with alcohol and drugs, because I felt: I might as well kill myself in my way. But I realized 5 years passed and I was still alive. It’s funny that it took the HIV to change my life to a positive.
  • Safer sex education for seniors.
  • I taught my son: {quote}Wrap it up!{quote} I would tell all the boys, {quote}wear the condoms!{quote} Then didn’t take my own advice... We are of a generation where that was not something we have to think about.
  • I was much worse, boy, I couldn’t walk, I was in a wheelchair. But thank God, I’m hopefully back to normal. So, I’ve come a long way. I knew so many people who have died.
  • I always said to myself: {quote}I wonder if I’m gonna get sick.{quote} And sure enough the day came. I guess I didn’t want to deal with it, you know what I mean?
  • No es el miedo a morir – es el miedo al rechazo.It’s not the fear of dying – it’s the fear of being rejected.
  • The guy I was so madly in love with tested positive for HIV. I said: “Why didn’t you tell me?{quote} He says, {quote}I’m 68 years old, I’ve never worn a condom in my life, and I’m not gonna start now.{quote}
  • There’s not a day that you don’t wake up and know you have HIV. Probably, out of nineteen years I had five good years.  The rest of them I’ve been sick as a dog. When I first started taking protease inhibitors, that was 1997.  My t-cell count was fabulous, my viral load was fabulous – but I couldn’t walk.  Those things made me so sick, uh, God they made me so sick! And you’ve got to do that for the rest of your entire life?
  • Right after I was diagnosed, the nurse said: “How old are you?”  I said, “fifty-eight.”  She said, “how did you get it, through needles?”  I said, “no, I got it through sex.”  She said: “You’re having sex at your age?  That’s disgusting!”
  • Most of my friends are dead. There’s a whole generation that disappeared in the male gay community. I didn’t think I was gonna live much longer, I kept making these three-year plans. I wanted to do something that made a difference. And I got to the end of the three years, and hell, I’m not dead yet. So I made another 3-year commitment. I’ve given up on doing that, it just doesn’t make any sense.
  • There’s a lot of myths that we sort of shrivel up and die, and it’s not true. You have this ageism in the community — it’s so youth-oriented, you don’t feel welcome. As if you turn 40 and you turn straight or something. I can assure you that didn’t happen.
  • It really was an incredible and exciting time – trying to inspire men who had the virus and give them an outlet for their talents.  Making a difference in the lives of others, as well as making a difference in my own life.
  • Now it is about living for me. It is about happiness. It is about trying to experience as much of life’s beauty that I can experience in the next… in the rest of my life. It would be also about companionship, about sharing with someone. And I believe it will happen. I’m at that crossroads at the moment. And it’s a beautiful time in my life.
  • THE GRAYING OF AIDS
    • – stories from a graying pandemic | oral history archive
    • – graying of AIDS | portraits
    • – age is not a condom | bus shelter campaign
    • – well beyond HIV campaign
    • – about the project
  • COMMUNITY YOUTH MEDIA
    • – was geht?! magazine
    • – #bleibistan exhibit
    • – newsgroup afghanistan
  • DOCUMENTARY WORK
    • – the golden venture
    • – generation exile
    • – chinatown youth culture
    • – chinatown baby boomers
    • – on borrowed time | growing up with HIV
    • – americana | 1
    • – americana | 2
    • – world war 2 reloaded
    • – berlin | ostalgie at 20
    • – the hbo alzheimer's project
  • MULTIMEDIA
    • – standing up to stigma
    • – the graying of AIDS | multimedia documentary
    • – our family: made in india
    • – aging out of foster care
    • – world war 2 reloaded | teaser
  • PUBLICATIONS
    • – editorial | tearsheets
    • – institutional | ngo
    • – journey of hope | book
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