FAQ
Is this project complete? Stories from an Aging Pandemic is a work-in-progress: some interviews are still being transcribed and edited, […]
Video Compilation
The video portraits of Bill, Sue, Ronald, Richard and Robert, some of the earliest participants of the Graying of AIDS
Susan, age 54 | New York, USA
I guess I don’t even think about it too much anymore. In the first few years? Like, almost 24/7, it
Jesse, age 59 | Ellicot City, Maryland, USA
I was aware that I was likely positive. My late partner died of AIDS in 1985, and I am very
Kim, age 59 | Melbourne, Australia
I first learned I was positive in 1994. I was unwell and went to a friend of mine who was
Hope, age 62 | Francistown, Botswana
I was working with a family, and somebody had some kind of blisters that week. I was in Australia then.
Jesus, age 56 | Mexico & California, USA
I arrived to USA in 1984. I knew what started to be in the news, everything about the gay cancer
Bob, age 69 | Warkworth, Canada
HIV is the kind of thing you can’t really understand until you experience it, because remember, in those days we’re
Nomampondo, age 52 | Johannesburg, South Africa
At least be there for the mothers! I always tell my daughter that she saw me struggling in front of
Phumzile, age 52 | Johannesburg, South Africa
We need to remember that HIV is a justice issue. If we don’t deal with the structural injustices, people will
Sebastian, age 65 | Harare, Zimbabwe
I remember it was about 15 years ago. I was constantly sick and I didn’t know what was wrong with
Rick, age 60 | Pretoria, South Africa
Originally I was from Scotland. I’ve been in South Africa now for 36 years. I think I befriended my little
Proscovia, age 55 | Tororo, Uganda
For a long time, I have been working with the media. I have been writing my stories, and that’s how
Loon, age 50 | Manipur, India
From 1983 to 1997, I am fully on heroin in between lots of rehab and lots of jail and lots
Ron, age 50 | District of Columbia, USA
I was a closeted gay man working in international development. I had been a Peace Corps volunteer and was going
Ron, age 66 | District of Columbia, USA
I was suicidal when I was thirteen. Because I was gay, or “sissy” as they used to say in those
Olive, age 53 | Saint Catherine, Jamaica
I actually don’t do “My Story.” I don’t do testimonies. People like other people’s business, so it’s not what I
JP, age 52 | Namibia and Vattholma, Sweden
My partner at the time was having problems with his eyes. I had been speaking to him for some time
Tendayi, age 50 | Harare, Zimbabwe
I was a model, I ran the largest modeling agency in Zimbabwe. And I looked the part. Coming from high
Julian, age 58 | South London, United Kingdom
I’m the typical “helper.” Actually that’s really good therapy, it makes you reflect upon yourself. I was an activist in
Charlie, age 58 | Auckland, New Zealand
People were just dying in ’83 and ’84. All my friends were dying around me, and then a very good
Betti, age 51 | Abidjan, Ivory Coast
I discovered my status after I gave birth, in 1997. I was sick and I went to see a doctor
Neale, age 54, and Max, age 60 / Melbourne, Australia
Neale: I met this man while we were conversing online. It was really a meeting of minds on a
New Partners & Getting the Word Out About Aging and HIV
January 14th, 2015 Happy New Year! 2015 is already off to an exciting start for The Graying of AIDS: we’re
Gerome, age 51 | Abbotsford, Australia
I think that my story is personal, it’s unique, and it is not tragic. And, I think it’s something that
Jane, age 57 | Auckland, New Zealand
Sometimes, I allow myself to have a wallow day. But it doesn’t happen much now. It used to happen. I
Dave, 68 | California, USA
We got kicked out of our church. We got kicked out of our small group. The pastor was in visiting
Michael, age 62 | Auckland, New Zealand
I was diagnosed in September 2010. I’ve only had it 4 years. It couldn’t have been much earlier than that.
Suzanne, age 59 | Melbourne, Australia
I first learned that I was HIV-positive in a letter from a doctor. I’d been working in a little hospital
Rodney, age 67 | Melbourne, Australia
I didn’t come out. I didn’t tell anyone. No one knew for 10 years. And I think that’s what helped
Luwiza, age 51 | Lusaka, Zambia
Despite the health personnel saying that, “You isolate her,” my sister was there for me. My mother was there. Would
Stephen, age 59 | Kampala, Uganda
When I started working in 1984 as a doctor, I saw so many people whom I now know had AIDS,
Meng Lin, age 53 | Beijing, China
I told my family, and I do not have a full knowledge about HIV/AIDS, but I tell them I’m HIV-positive.
Ella, age “nearly 50” | Selangor, Malaysia
In year 2003 I already need to be on medications, but at that particle of time, that we need to
Katherine, age 56 | Adelaide, Australia
I always wanted a big family, you know – four to six children. My career was in childcare. I found
David, age 61 | Melbourne, Australia
I’ve really had a lot of AIDS-defining illnesses in the ‘90s, some of which I’ve lived with since. I’ve developed
Deloris, age 54 | New Jersey, “Jamerican” (USA & Jamaica)
I am very fortunate. I’ve been able to educate myself to the graduate level. I hold down a really decent
Art, age 62 | Lac des Mille Lacs First Nation, Anishnawbe / Toronto, Canada
I’m 62 now, but I came out when I was 26. So it was quite late. And back then, being
Bev, age 63 | Gunditjmara Nation, Wangaratta, Australia
I don’t feel OLD old, ‘cause I’m still feeling young, because I’m still here, you know. I feel really grateful
Bill, age 64 | Cairns, Australia
It’s very difficult to meet positive people, because mostly, they’re still too afraid to come out and disclose their status
Glenn, age 50 | Newcastle, Australia
I think it’s harder now to live up to the expectation that you’re well. People think that HIV has been
Susan, age 62 | Melbourne, Australia
By the end of ’99, I’d really been living with HIV for over a decade – my health was going
Doris, age 58 & Randy, age 48 | Canada
Doris: I was caught up in my addictions, and I thought the weight loss was connected to my
Claire, age 55 | San Francisco, CA, USA
I just remember being very naïve, you know, and people would tell me to do something, and I would do
Hazel, age 54 | San Francisco, CA, USA
Getting older is like, um… Things are happening with my body that I don’t like. You know, my mind is
Rod, age 55 | Tasmania, Australia
It’s strange to say: I was living in Sydney in the 1980s when the newspapers, every week when they came
Naisiadet, age 52 | Nairobi, Kenya
I decided to go back to school after I got fired from Barclay’s Bank because of my status. I was
Ethel, age 60 | Paramaribo, Suriname
I’m one of the long-term survivors. I’m not use medicines because my viral load is undetectable and my CD4 cell
John, age 68 | Coogee, Australia
My partner started to show symptoms of AIDS in 1983, and I talked to my doctor, who said, “Look, this
Robert, age 62 | Medicine Hat, Canada
I was born in Louisville, Kentucky. I moved to Montreal, Canada, and lived for some 15 years in Germany, and
Lorena, age 52 | New York, USA & Mexico
Al principio– sí, mucho rechazo. Primero porque era transex– soy transgénera, mujer transexual. Y luego el VIH, luego no saber
Andrea, age “51 and a half” & Edward, age 55 | New York, USA
Edward: She used to follow me around all the time. I was 15, she was 11, so I looked at
Charlene, age 54 | Texas, USA
I always knew that there would be a possibility. I had some friends that passed away. I was a intravenous
Jan, age 64 | Mataura, New Zealand
It was the 15th of January, 2002. I had a needlestick injury from one of my HIV patients. I’m a
Ron, age 59 & Milagros, age 47 | Tennessee, USA
Ron: I found out my status when I was incarcerated, as a result of seeing a dentist. The
José, age 58 | Quito, Ecuador
HIV has a– una connotación mala, negativa. Pero para mí, creo que HIV has given me everything. Everything. A new
Flor, age 60 | Mexico City, Mexico
Me quité eso de que: “Porque Dios me castigó? Porque…?” De estarme martirizando, porque pensaba yo que Dios me había
Bryan, age 52 | Ohio, USA
I’ve had cancer three times, I had stage four cancer. I’ve been through a lot. Every day is a bad
Bob, age 59 and Ann, age “over 50” | Arkansas, USA
Ann: I kept it a secret for a decade that I was positive. It would have cost me
Margot, age 59 | Maryland, USA
Getting old is a bitch. You go to bed feeling one way, and you wake up and it’s something else.
Barbara, age 55 | Florida, USA
I thought I might want to have a baby and I was 43, and I knew I would have to
Rev. Gideon, age 53 | Kampala, Uganda
So the first question was: Are you going to keep quiet or are you going to tell someone? It took
Gabi, age 55 | Munich, Germany
It’s still not the same. I mean, speaking for myself, I’d rather have HIV than some cancer, right? But for
Jack, age 60 | Maryland, USA
I learned how to ride a motorcycle, and to get my motorcycle license I had to bring my motorcycle back
Barb, age 58 | West Virginia, USA
It has totally changed my life. Before, I was a free spirit and, you know, loved to date. I still
Derani, age 50 | New York, USA
My mother was scared of me. I was cooking, and I cut myself – ‘cause I was always the cook
Wanda, age 58 | North Carolina, USA
When you’re going through menopause, and you’re a seasoned woman, and you’ve been through three really serious relationships and the
C. Bruce, age 63 | Texas, USA
I would like to be able to tell what is AIDS, and what is aging. That would be really wonderful,
Fredricka, age 50 | California, USA
I sort of don’t have a person that I can say, “Just take care of me.” When I know I
Ron, age 66 | Washington, D.C., USA
I became openly positive to many of my friends and my family first, and then as I became more comfortable,
Jennifer, age 54 | Windhoek, Namibia & Zimbabwe
We women, we were really the leaders. Because we were the ones who were being blamed. But then it came
Jane, age 53 | South Coast, England
I decided to change the world. I went on that trajectory. For about a year or two I was very
Guy, age 55 | Calgary, Canada
I believe some people are born with their glass half full, and some are born with their glass half empty,
Pat, age 57 | South Carolina, USA
In 1985, I was incarcerated at the women’s correctional institution in Columbia, South Carolina. And during intake they take your
Dorothy, age 55 | Nairobi, Kenya
I found out about my HIV status 20 years ago, that was in 1990, I think. And, how I found
Sharon, age 62 | Ohio, USA
The doctor said, “You’ve tested positive for HIV, it must be wrong. Come in Monday, we’ll retest you.” I think,
Steve, age 58 | Maryland, USA
It’s not so much that I fear that I’ll die with HIV or AIDS, ‘cause I don’t think that’s gonna
Sister Vicious Power Hungry Bitch, age 60 | California, USA
In San Francisco, it was the community that had to come up with creative ways to deal with all of
Scott, age 61 | New York, USA
Back in the ‘80s when I found out I was positive, I was just hoping to get to see my
Garry, age 55 | Sydney, Australia
For me, I had to make that distinction between “Me the Caregiver” and “Me the Person.” I couldn’t see myself
Anna, age 65 | Maryland, USA
Initially, a lot of responses were: are you angry? You know, even my grandson expressed that he was mad. But
José, age 60 | San Juan, Puerto Rico
I think that we’re not a priority in the health system. They are thinking more in the young person. We
Davies, age 54 | Nairobi, Kenya
I’m open about my status, so I do not care who I talk to when I am down. But I
Gregg, age 52 & Ruth, age 54 | Virginia, USA
Ruth: Through my sobriety process I started feeling better about myself, started looking better, and I was like, okay, now
Liz, age 57 | West Coast First Nations, Canada
I’ve been doing a lot of healing through my culture and traditions…It actually came by accident, when I started attending
Emmanuel, age 61 | Washington, D.C., USA
When I first discovered I was HIV, I started to reflect on my “formative years” as I call them, and
Challenging Stereotypes, One Bus Shelter at a Time (Part 2)
July 8th, 2014 As we mentioned in our last blog post, earlier this year The Graying of AIDS worked closely
Challenging Stereotypes, One Bus Shelter at a Time (Part 1)
June 30th, 2014 Our Ground-breaking Portrait Series for NYC’s “Age is Not a Condom” Campaign Here at The Graying of
Show Some Skin for a Great Cause!
February 13th, 2014 Casting Call for NYC Bus Shelter Campaign The Graying of AIDS is excited to be working in
The Word is Getting Out: People are Talking about Aging and HIV
The last few months have brought some exciting new developments that suggest a growing awareness of the challenges affecting older
A Time of Dialog and Reflection in NYC
June 26, 2013 This summer New York City is offering a variety of opportunities to gain perspective on the history
Searching for Older Adult Perspectives on World AIDS Day
December 6, 2012 While the theme for World AIDS Day (December 1st) was “Getting to zero: zero new HIV infections.
Aging and HIV Media Highlights & Project Updates
In the Global Village of the XIX International AIDS Conference – held in Washington, DC, from July 22-27, 2012 –
It’s a Wrap!
As Our Participatory Installation at AIDS2012 Closes, You Can Still Visit Our On-line Exhibition Over the roughly five days that the
Stories From An Aging Pandemic
What does aging with HIV look like? Increased access to antiretroviral therapy is enabling people around the world to live
The Graying of AIDS – Stories from an Aging Pandemic.
A Participatory Installation at the XIX International AIDS Conference Washington, DC, July 22 – 27th http://agrayingpandemic.tumblr.com
Aging in America: The American Society on Aging’s Annual Conference
From March 28th – April 1, over 3,000 attendees and presenters swarmed Washington DC’s Marriott Wardman Park and Omni Shoreham
Reel Aging: Films for the Generations
A Residency on Aging, Documentaries, and Audience Engagement (The second of three posts on our March adventures) In the 2+
March Madness
March Was a Whirlwind: The Graying of AIDS on the Road March was an inspiring, information-and-opportunity-packed month for The Graying
Get Tested
With early detection and treatment, many people are able to live with asymptomatic HIV for many years before progressing to
In Memoriam: Sue and Richard
Since Katja first began her work on The Graying of AIDS in 2006, we have lost a number of the
Graying Receives Invaluable Boost from Two Amazing Independent Documentary Film Organizations
It’s an exciting time for The Graying of AIDS, with two wonderful new developments in the evolution of our
Documentary Films on Aging
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
Introducing “ARTAHA”
On World AIDS Day we soft-launched a new blog on our website, “Artists Responding to Aging and to HIV/AIDS,” or
The Legends Ball, created by Oprah Winfrey
As a nurse, I have been working in HIV for 19 years and I am still moved with compassion whenever
Making a Media Noise on World AIDS Day
People just don’t know. They think it’s gone. The only way it will ever go away is by educating, people
Anna Fowlkes, 64 | Baltimore, MD
I met my husband in a night club. He was one of the musicians there and I used to go
My Grandma Has AIDS: Annisha’s Story, by Valerie Reeder-Bey and Annisha Monic Wilburn
When I was first diagnosed, information about HIV was only provided by medical personnel. However, there was no information about
Feature: Dr. Robert Franke | Standing up to Stigma
December 1st, 2011 “What if there are many other older people, and this is the first wave of them, who
Anna Fowlkes, 64 | Baltimore, MD
Anna has worked with the Graying of AIDS project in many capacities over the years. This video was produced for
Bill Rydwels, 77 | Chicago, IL
Diagnosed in 1985, Bill lost his partner of 17 years in the early days of the epidemic. He is a
Richard Kearns, 58 | Los Angeles, CA
A poet, journalist, activist, and Graying of AIDS advisory panel member, Richard is a long-term survivor living in Los Angeles.
Ronald Johnson, 63 | Washington, DC
Diagnosed in 1989, Ronald lost his partner in the early days of the epidemic. In the years since he has
Robert Brewster, 75 | NYC, NY
A long-term survivor living with HIV, Robert has been active in the arts and HIV-positive communities of New York City
Sue Saunders, 73 | Fort Lauderdale, FL
Diagnosed in 1991 at the age 58, Sue helped launch Florida’s first Seniors HIV Intervention Program. Sue has four grown
International Transgender Day of Remembrance: Care Providers Have a Role to Play
Being transgendered is such a singular experience, how can you adequately explain it to someone who isn’t transgendered? There is
Edie & Thea: A Very Long Engagement, a documentary film by Susan Muska and Gréta Ólafsdottir
Edie and Thea: A Very Long Engagement portrays a love story, through photographs and interview clips, of a once young
A Hundred Million Miracles, a song by Richard Rodgers (composer) and Oscar Hammerstein II (librettist/lyricist)
A song from Flower Drum Song by Rodgers and Hammerstein has become a precious note to me on life and living
Graying of AIDS installation and projection on Governors Island (pt. 2)
As we continue to think about creative new ways to introduce the issues raised in The Graying of AIDS to
New Video For National HIV/AIDS and Aging Awareness Day
In recognition of the fourth annual National HIV/AIDS and Aging Awareness Day on September 18th, The Graying of AIDS teamed
Visit The Graying of AIDS exhibit on Governors Island
The Graying of AIDS is thrilled to present our work as part of the fourth annual Governors Island Art Fair,
Lonely Planet, a play by Steven Dietz
In 1996, I directed a production of Steven Dietz’ Lonely Planet for InterAct Theatre Company, an organization I founded in
Marking the 30th Anniversary of the AIDS Epidemic
While HIV/AIDS in the US generally receives little media attention these days, there has been a recent surge in coverage
Angels In America: A Gay Fantasia on National Themes, by Tony Kushner
I was born in 1981, the year generally considered to be the start of the AIDS epidemic. I have never
The Way We Live Now: American Plays & the AIDS crisis, edited by M. Elizabeth Osborn
I do not know an adult life without HIV. In 1981 I entered college, began my life as a gay
Graying In The News
A collection of media coverage featuring the Graying of AIDS project; for a news media round-up of current articles on
And The Band Played On: Politics, People, and the AIDS Epidemic, by Randy Shilts
“Probably the most moving thing I have ever read on HIV/AIDS was And the Band Played On, by Randy
Support Our Project
At its core, The Graying of AIDS project is run by a two-person team, so we couldn’t have come this far without
GET INVOLVED
If you find the stories and issues explored in The Graying of AIDS compelling, we urge you to channel
Student Collaborators
The Graying of AIDS is committed to supporting early- and mid-career professionals as they expand their knowledge and professional skill
Fred Hersch, “My Coma Dreams”
People who know about Fred Hersch tend to know about the pianist’s evocative, eloquent compositions and improvisations, which regularly blur
“Graying of HIV” Symposium in Baltimore, MD
According to a June 2010 “Fact Sheet” by the Maryland Department of Health and Mental Hygiene, 8% of all state
Training Materials
The Graying of AIDS materials are available as PDF download or can be ordered as a 44-page print magazine via
Welcome to the Artists Responding Blog
The arts have always played a critical role in examining challenging issues, exploring diverging perspectives, and communicating personal truths. In
Seniors Not Accessing Critical Preventative Health Services
A new report out of the US Department of Health and Human Services Office highlights how few seniors are currently
In the News: Canada Facing Similar Struggles, Even With Universal Access to Care
From thestar.com, the on-line face of The Toronto Star, comes word that many of the same challenges confronting long-term and
An Eloquent Argument For Coordinated Care
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 on Aging with HIV
GMHC’s Sean Cahill brought the aging of the HIV/AIDS epidemic to the attention of a much wider audience with his
Fiscal Year 2012 Budget Battle Begins
Just in time for Valentine’s Day: the federal powers-that-be have started drawing their lines in the sand for fiscal year
HIV 50+ Activist Ed Shaw
Congratulations to Graying of AIDS advisory panel member Ed Shaw, whose lengthy career as an HIV/AIDS educator and activist was
Project History: The Graying of AIDS
These portraits and interviews were initially produced by photojournalist Katja Heinemann for Time Magazine in 2006, as both a photo
Call to Arms
Sex education is not just for kids and condoms are not just birth control. “How will I ever tell my
Bios – Participants
Carnetta Best Fort Lauderdale, Florida When Carnetta was interviewed in 2006, she was living in a transitional residence for
Modes of Transmission
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. […]
Standing up to Stigma
[field name=video] In honor of World AIDS Day (12/1/10), the website for the AARP Bulletin highlighted the story of Dr.
Bill Rydwels, 77 | Chicago, IL
No matter what we do, sex is a beautiful gift, because it is such an exhilarating feeling, and it’s such
Carnetta Best, 60 | Fort Lauderdale, FL
I would like to say that it’s not the end. There was a time when somebody said you had HIV,
Dee, 57 | Newark, NJ
I don’t feel old. I never thought of myself as being 57, 60. I didn’t think that far, you know.
Larry, 61 | Springfield, IL
I wanted to do something that made a difference, and that’s why I took the job for Mayor Daley as
Supporters
We are tremendously grateful to the following for their many forms of generous support. The extraordinary individuals who shared their
Linda, 61 & Thomas, 58 | NYC, NY
Linda: I look at him how he was, and I look at him now, I feel so bad. Because I
Los Doctores (Louis, 51 & Rosalia, 47) | Fort Lauderdale, FL
Louis: She took a chance with me. It’s funny, I’m positive, but I didn’t wanna ask a woman that was
Robert Brewster, 75 | NYC, NY
I was always working on my music. That was a part of who I was. I was practicing instead of
Team
The Graying of AIDS is an independent collaborative documentary project and educational campaign created by Katja Heinemann, a visual journalist,
Resource Links
We are working towards creating a list of links that will have something for everyone. Whether you are an older
Looking Forward
Many long-term survivors and their more recently diagnosed peers are struggling with the consequences of the current societal complacency about
Contact Us
Katja Heinemann Project Co-Director / Visual Journalist www.katjaheinemann.com Naomi Schegloff, MPH Project Co-Director / Director of Community Engagement
HIV/AIDS in the US
The history of the HIV/AIDS epidemic can be broken down into the periods before and after 1996, when modern HIV
Glossary
AIDS Short for “acquired immune deficiency syndrome,” the life-threatening stage of HIV infection. A medical diagnosis for people whose immune
White House Meeting on HIV & Aging
The Graying of AIDS was honored to join a group of activists, providers, researchers, and government agency representatives for a
Welcome
In our work to promote sensitivity, dialog and collaboration around the day-to-day realities of older adults aging with HIV, The
Advisory Panel
Heather Altman, MPH (Chapel Hill, NC) has been working with Carol Woods Retirement Community since 2003, and is currently the
Ronald Johnson, 63 | Washington, DC
Certainly, since the advent of protease inhibitors and the real progress in antiretroviral medication, the ability to treat HIV infection
Why This Project/Why Now
Black or white, gay or straight, the face that most Americans imagine when they think about HIV/AIDS isn’t particularly wrinkled.
Recurring Themes – Sex & Dating
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.
Recurring Themes – How It Feels
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. […]
Recurring Themes – Communication
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 […]
Sue Saunders, 73 | Fort Lauderdale, FL
I’ve been to places like that where people over 50 live. And these ladies, older ladies, say: oh, but he’s
Recurring Themes – Stigma
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. […]