FAQ
Is this project complete? Stories from an Aging Pandemic is a work-in-progress: some interviews are still being transcribed and edited, […]
Is this project complete? Stories from an Aging Pandemic is a work-in-progress: some interviews are still being transcribed and edited, […]
The video portraits of Bill, Sue, Ronald, Richard and Robert, some of the earliest participants of the Graying of AIDS
I guess I don’t even think about it too much anymore. In the first few years? Like, almost 24/7, it
I was aware that I was likely positive. My late partner died of AIDS in 1985, and I am very
I first learned I was positive in 1994. I was unwell and went to a friend of mine who was
I was working with a family, and somebody had some kind of blisters that week. I was in Australia then.
I arrived to USA in 1984. I knew what started to be in the news, everything about the gay cancer
HIV is the kind of thing you can’t really understand until you experience it, because remember, in those days we’re
At least be there for the mothers! I always tell my daughter that she saw me struggling in front of
We need to remember that HIV is a justice issue. If we don’t deal with the structural injustices, people will
I remember it was about 15 years ago. I was constantly sick and I didn’t know what was wrong with
Originally I was from Scotland. I’ve been in South Africa now for 36 years. I think I befriended my little
For a long time, I have been working with the media. I have been writing my stories, and that’s how
From 1983 to 1997, I am fully on heroin in between lots of rehab and lots of jail and lots
I was a closeted gay man working in international development. I had been a Peace Corps volunteer and was going
I was suicidal when I was thirteen. Because I was gay, or “sissy” as they used to say in those
I actually don’t do “My Story.” I don’t do testimonies. People like other people’s business, so it’s not what I
My partner at the time was having problems with his eyes. I had been speaking to him for some time
I was a model, I ran the largest modeling agency in Zimbabwe. And I looked the part. Coming from high
I’m the typical “helper.” Actually that’s really good therapy, it makes you reflect upon yourself. I was an activist in
People were just dying in ’83 and ’84. All my friends were dying around me, and then a very good
I discovered my status after I gave birth, in 1997. I was sick and I went to see a doctor
Neale: I met this man while we were conversing online. It was really a meeting of minds on a
January 14th, 2015 Happy New Year! 2015 is already off to an exciting start for The Graying of AIDS: we’re
I think that my story is personal, it’s unique, and it is not tragic. And, I think it’s something that
Sometimes, I allow myself to have a wallow day. But it doesn’t happen much now. It used to happen. I
We got kicked out of our church. We got kicked out of our small group. The pastor was in visiting
I was diagnosed in September 2010. I’ve only had it 4 years. It couldn’t have been much earlier than that.
I first learned that I was HIV-positive in a letter from a doctor. I’d been working in a little hospital
I didn’t come out. I didn’t tell anyone. No one knew for 10 years. And I think that’s what helped
Despite the health personnel saying that, “You isolate her,” my sister was there for me. My mother was there. Would
When I started working in 1984 as a doctor, I saw so many people whom I now know had AIDS,
I told my family, and I do not have a full knowledge about HIV/AIDS, but I tell them I’m HIV-positive.
In year 2003 I already need to be on medications, but at that particle of time, that we need to
I always wanted a big family, you know – four to six children. My career was in childcare. I found
I’ve really had a lot of AIDS-defining illnesses in the ‘90s, some of which I’ve lived with since. I’ve developed
I am very fortunate. I’ve been able to educate myself to the graduate level. I hold down a really decent
I’m 62 now, but I came out when I was 26. So it was quite late. And back then, being
I don’t feel OLD old, ‘cause I’m still feeling young, because I’m still here, you know. I feel really grateful
It’s very difficult to meet positive people, because mostly, they’re still too afraid to come out and disclose their status
I think it’s harder now to live up to the expectation that you’re well. People think that HIV has been
By the end of ’99, I’d really been living with HIV for over a decade – my health was going
Doris: I was caught up in my addictions, and I thought the weight loss was connected to my
I just remember being very naïve, you know, and people would tell me to do something, and I would do
Getting older is like, um… Things are happening with my body that I don’t like. You know, my mind is
It’s strange to say: I was living in Sydney in the 1980s when the newspapers, every week when they came
I decided to go back to school after I got fired from Barclay’s Bank because of my status. I was
I’m one of the long-term survivors. I’m not use medicines because my viral load is undetectable and my CD4 cell
My partner started to show symptoms of AIDS in 1983, and I talked to my doctor, who said, “Look, this
I was born in Louisville, Kentucky. I moved to Montreal, Canada, and lived for some 15 years in Germany, and
Al principio– sí, mucho rechazo. Primero porque era transex– soy transgénera, mujer transexual. Y luego el VIH, luego no saber
Edward: She used to follow me around all the time. I was 15, she was 11, so I looked at
I always knew that there would be a possibility. I had some friends that passed away. I was a intravenous
It was the 15th of January, 2002. I had a needlestick injury from one of my HIV patients. I’m a
Ron: I found out my status when I was incarcerated, as a result of seeing a dentist. The
HIV has a– una connotación mala, negativa. Pero para mí, creo que HIV has given me everything. Everything. A new
Me quité eso de que: “Porque Dios me castigó? Porque…?” De estarme martirizando, porque pensaba yo que Dios me había
I’ve had cancer three times, I had stage four cancer. I’ve been through a lot. Every day is a bad
Ann: I kept it a secret for a decade that I was positive. It would have cost me
Getting old is a bitch. You go to bed feeling one way, and you wake up and it’s something else.
I thought I might want to have a baby and I was 43, and I knew I would have to
So the first question was: Are you going to keep quiet or are you going to tell someone? It took
It’s still not the same. I mean, speaking for myself, I’d rather have HIV than some cancer, right? But for
I learned how to ride a motorcycle, and to get my motorcycle license I had to bring my motorcycle back
It has totally changed my life. Before, I was a free spirit and, you know, loved to date. I still
My mother was scared of me. I was cooking, and I cut myself – ‘cause I was always the cook
When you’re going through menopause, and you’re a seasoned woman, and you’ve been through three really serious relationships and the
I would like to be able to tell what is AIDS, and what is aging. That would be really wonderful,
I sort of don’t have a person that I can say, “Just take care of me.” When I know I
I became openly positive to many of my friends and my family first, and then as I became more comfortable,
We women, we were really the leaders. Because we were the ones who were being blamed. But then it came
I decided to change the world. I went on that trajectory. For about a year or two I was very
I believe some people are born with their glass half full, and some are born with their glass half empty,
In 1985, I was incarcerated at the women’s correctional institution in Columbia, South Carolina. And during intake they take your
I found out about my HIV status 20 years ago, that was in 1990, I think. And, how I found
The doctor said, “You’ve tested positive for HIV, it must be wrong. Come in Monday, we’ll retest you.” I think,
It’s not so much that I fear that I’ll die with HIV or AIDS, ‘cause I don’t think that’s gonna
In San Francisco, it was the community that had to come up with creative ways to deal with all of
Back in the ‘80s when I found out I was positive, I was just hoping to get to see my
For me, I had to make that distinction between “Me the Caregiver” and “Me the Person.” I couldn’t see myself
Initially, a lot of responses were: are you angry? You know, even my grandson expressed that he was mad. But
I think that we’re not a priority in the health system. They are thinking more in the young person. We
I’m open about my status, so I do not care who I talk to when I am down. But I
Ruth: Through my sobriety process I started feeling better about myself, started looking better, and I was like, okay, now
I’ve been doing a lot of healing through my culture and traditions…It actually came by accident, when I started attending
When I first discovered I was HIV, I started to reflect on my “formative years” as I call them, and
July 8th, 2014 As we mentioned in our last blog post, earlier this year The Graying of AIDS worked closely
June 30th, 2014 Our Ground-breaking Portrait Series for NYC’s “Age is Not a Condom” Campaign Here at The Graying of
February 13th, 2014 Casting Call for NYC Bus Shelter Campaign The Graying of AIDS is excited to be working in
The last few months have brought some exciting new developments that suggest a growing awareness of the challenges affecting older
June 26, 2013 This summer New York City is offering a variety of opportunities to gain perspective on the history
While the theme for World AIDS Day (December 1st) was “Getting to zero: zero new HIV infections. Zero discrimination. Zero
In the Global Village of the XIX International AIDS Conference – held in Washington, DC, from July 22-27, 2012 –
As Our Participatory Installation at AIDS2012 Closes, You Can Still Visit Our On-line Exhibition Over the roughly five days that the
What does aging with HIV look like? Increased access to antiretroviral therapy is enabling people around the world to live
A Participatory Installation at the XIX International AIDS Conference Washington, DC, July 22 – 27th http://agrayingpandemic.tumblr.com
From March 28th – April 1, over 3,000 attendees and presenters swarmed Washington DC’s Marriott Wardman Park and Omni Shoreham
A Residency on Aging, Documentaries, and Audience Engagement (The second of three posts on our March adventures) In the 2+
March Was a Whirlwind: The Graying of AIDS on the Road March was an inspiring, information-and-opportunity-packed month for The Graying
With early detection and treatment, many people are able to live with asymptomatic HIV for many years before progressing to
Since Katja first began her work on The Graying of AIDS in 2006, we have lost a number of the
It’s an exciting time for The Graying of AIDS, with two wonderful new developments in the evolution of our
The Graying of AIDS in not just a documentary project about HIV/AIDS, but about aging with HIV/AIDS. As it turns out, ours is
On World AIDS Day we soft-launched a new blog on our website, “Artists Responding to Aging and to HIV/AIDS,” or
As a nurse, I have been working in HIV for 19 years and I am still moved with compassion whenever
People just don’t know. They think it’s gone. The only way it will ever go away is by educating, people
I met my husband in a night club. He was one of the musicians there and I used to go
When I was first diagnosed, information about HIV was only provided by medical personnel. However, there was no information about
December 1st, 2011 “What if there are many other older people, and this is the first wave of them, who
Anna has worked with the Graying of AIDS project in many capacities over the years. This video was produced for
Diagnosed in 1985, Bill lost his partner of 17 years in the early days of the epidemic. He is a
A poet, journalist, activist, and Graying of AIDS advisory panel member, Richard is a long-term survivor living in Los Angeles.
Diagnosed in 1989, Ronald lost his partner in the early days of the epidemic. In the years since he has
A long-term survivor living with HIV, Robert has been active in the arts and HIV-positive communities of New York City
Diagnosed in 1991 at the age 58, Sue helped launch Florida’s first Seniors HIV Intervention Program. Sue has four grown
Being transgendered is such a singular experience, how can you adequately explain it to someone who isn’t transgendered? There is
Edie and Thea: A Very Long Engagement portrays a love story, through photographs and interview clips, of a once young
A song from Flower Drum Song by Rodgers and Hammerstein has become a precious note to me on life and living
As we continue to think about creative new ways to introduce the issues raised in The Graying of AIDS to
In recognition of the fourth annual National HIV/AIDS and Aging Awareness Day on September 18th, The Graying of AIDS teamed
The Graying of AIDS is thrilled to present our work as part of the fourth annual Governors Island Art Fair,
In 1996, I directed a production of Steven Dietz’ Lonely Planet for InterAct Theatre Company, an organization I founded in
While HIV/AIDS in the US generally receives little media attention these days, there has been a recent surge in coverage
I was born in 1981, the year generally considered to be the start of the AIDS epidemic. I have never
I do not know an adult life without HIV. In 1981 I entered college, began my life as a gay
A collection of media coverage featuring the Graying of AIDS project; for a news media round-up of current articles on
“Probably the most moving thing I have ever read on HIV/AIDS was And the Band Played On, by Randy
At its core, The Graying of AIDS project is run by a two-person team, so we couldn’t have come this far without
If you find the stories and issues explored in The Graying of AIDS compelling, we urge you to channel
The Graying of AIDS is committed to supporting early- and mid-career professionals as they expand their knowledge and professional skill
People who know about Fred Hersch tend to know about the pianist’s evocative, eloquent compositions and improvisations, which regularly blur
According to a June 2010 “Fact Sheet” by the Maryland Department of Health and Mental Hygiene, 8% of all state
The Graying of AIDS materials are available as PDF download or can be ordered as a 44-page print magazine via
The arts have always played a critical role in examining challenging issues, exploring diverging perspectives, and communicating personal truths. In
A new report out of the US Department of Health and Human Services Office highlights how few seniors are currently
From thestar.com, the on-line face of The Toronto Star, comes word that many of the same challenges confronting long-term and
Jane E. Brody’s piece for this week’s Health Section of The New York Times — “Tackling Care as Chronic Ailments
GMHC’s Sean Cahill brought the aging of the HIV/AIDS epidemic to the attention of a much wider audience with his
Just in time for Valentine’s Day: the federal powers-that-be have started drawing their lines in the sand for fiscal year
Congratulations to Graying of AIDS advisory panel member Ed Shaw, whose lengthy career as an HIV/AIDS educator and activist was
These portraits and interviews were initially produced by photojournalist Katja Heinemann for Time Magazine in 2006, as both a photo
Sex education is not just for kids and condoms are not just birth control. “How will I ever tell my
Carnetta Best Fort Lauderdale, Florida When Carnetta was interviewed in 2006, she was living in a transitional residence for

Choosing not to have sex or share needles is the most effective way to avoid possible exposure to HIV, but there are other very effective ways to reduce the chances of transmission and increase your chances of staying healthy. […]
[field name=video] In honor of World AIDS Day (12/1/10), the website for the AARP Bulletin highlighted the story of Dr.
No matter what we do, sex is a beautiful gift, because it is such an exhilarating feeling, and it’s such
I would like to say that it’s not the end. There was a time when somebody said you had HIV,
I don’t feel old. I never thought of myself as being 57, 60. I didn’t think that far, you know.
I wanted to do something that made a difference, and that’s why I took the job for Mayor Daley as
We are tremendously grateful to the following for their many forms of generous support. The extraordinary individuals who shared their
Linda: I look at him how he was, and I look at him now, I feel so bad. Because I
Louis: She took a chance with me. It’s funny, I’m positive, but I didn’t wanna ask a woman that was
I was always working on my music. That was a part of who I was. I was practicing instead of
The Graying of AIDS is an independent collaborative documentary project and educational campaign created by Katja Heinemann, a visual journalist,
We are working towards creating a list of links that will have something for everyone. Whether you are an older
Many long-term survivors and their more recently diagnosed peers are struggling with the consequences of the current societal complacency about
Katja Heinemann Project Co-Director / Visual Journalist www.katjaheinemann.com Naomi Schegloff, MPH Project Co-Director / Director of Community Engagement
The history of the HIV/AIDS epidemic can be broken down into the periods before and after 1996, when modern HIV
AIDS Short for “acquired immune deficiency syndrome,” the life-threatening stage of HIV infection. A medical diagnosis for people whose immune
The Graying of AIDS was honored to join a group of activists, providers, researchers, and government agency representatives for a
In our work to promote sensitivity, dialog and collaboration around the day-to-day realities of older adults aging with HIV, The
Heather Altman, MPH (Chapel Hill, NC) has been working with Carol Woods Retirement Community since 2003, and is currently the
Certainly, since the advent of protease inhibitors and the real progress in antiretroviral medication, the ability to treat HIV infection
Black or white, gay or straight, the face that most Americans imagine when they think about HIV/AIDS isn’t particularly wrinkled.
We may not talk about it or see it on movie screens, but sex and romance continue to play an important role in many people’s lives as they age. Some who have lost a long-term romantic partner are starting new intimate relationships for the first time since the HIV epidemic began. And some older adults have multiple partners or may be involved with someone who is not monogamous.

Many diseases and infections affect a specific part of the body, but HIV lives in the immune system and therefore ultimately impacts the whole body. While health care providers are trained to be experts in highly focused areas within the mental and physical health fields, they need to be sensitive to how the lines between their specialties can blur and work closely with other providers to maximize benefits for patients. Coordinating care is critical, as many medications can become dangerous or ineffective when combined. Side effects for medicines addressing physical ailments can include mental health issues like depression, and medications addressing mental health conditions such as depression may include physical symptoms like nausea or fluctuations in weight. […]
Communicating about HIV and risk behaviors related to sex or substance use can be difficult. Even when they know how to keep themselves safe, people often have a hard time talking to their partners about things like safer sex. Older adults who grew up at a time when discussion of sexuality was considered improper or vulgar can find these conversations particularly awkward. While everyone fears rejection, the stakes can be even higher for older adults who regularly struggle with feelings of social isolation and loneliness. Older people living with HIV appear to be particularly vulnerable […]
I’ve been to places like that where people over 50 live. And these ladies, older ladies, say: oh, but he’s
Dealing with any illness can be difficult, but the stigma associated with certain diseases can add additional hardship in the form of judgment and social exclusion. Some illnesses are more heavily stigmatized than others; HIV/AIDS has been particularly stigmatized since the beginning of the epidemic.
We made tremendous progress, but we still have a ways to go, and since we’re dealing with such bedrock values and issues around sexuality, sexual activity, drug use, it’s going to be slow to change some of the remaining amounts of the value issues that lead to stigma. —Ronald Johnson, age 58. […]