The Graying Of AIDS
FotoVisura
The Graying of AIDS – Stories from an Aging Epidemic is a multimedia documentary project that combines medium format color portraiture with in-depth oral history interviews to create a series of digital video portraits that draw attention to an astonishing fact: By 2015, half of all...
Katja Heinemann
http://c0875922.cdn.cloudfiles.rackspacecloud.com/43989.medium.jpg
http://www.fotovisura.com//user/katjaheinemann/view/the-graying-of-aids
12/15/11
The Graying of AIDS – Stories from an Aging Epidemic is a multimedia documentary project that combines medium format color portraiture with in-depth oral history interviews to create a series of digital video portraits that draw attention to an astonishing fact: By 2015, half of all Americans living with HIV will be over the age of fifty. American popular culture suggests underlying beliefs that we become increasingly irrelevant and inadequate as we age. At the same time, HIV/AIDS-related images in the media tend to focus on young bodies engaged in explicitly risky activities, radiantly healthy thanks to pharmaceuticals, or wracked with late-stage illness. The Graying of AIDS highlights personal stories that fall between those extremes. This documentary focuses on the persistent stigma surrounding the illness, and explores how people navigate relationships with their peers and communities as they grapple with the deeply personal and often taboo issues of failing health, changing bodies, f ears of mortality, and a shifting sense of self. Improved treatment options in the United States mean that HIV-infection is no longer considered a death sentence today – as a result, we have become complacent in addressing the epidemic in our midst, even though rates of new infection in this country have not decreased in more than two decades. HIV/AIDS is increasingly affecting the poor, marginalized, and those who have limited access to adequate care. Indeed, everything we can’t talk about as a society – race, class, gender, sex and sexuality, substance use, mental health/illness, power dynamics in relationships, fear of illness and death – creates roadblocks to prevention, diagnosis, and treatment, thereby contributing to the ongoing spread of the epidemic.
This project is centered around a series of multimedia portraits of both long-term survivors and newly infected older adults. Bill in Chicago remembers the early years of the epidemic as a war veteran might; Bob in Little Rock was recently evicted from his nursing home for being HIV-positive. Sue in Florida was infected by the “love of her life” at age 58; a nurse said to her, “What, you’re having sex at your age? That’s disgusting!” Anna, an African-American grandmother in Baltimore, is “the new face” of AIDS in the US. Shortly before his death from AIDS-related complications, Thomas in Brooklyn reflected that “Everybody thinks that it’ll happen to the other guy. You gotta start thinking—to somebody else, you are the other guy.” Robert in NY founded a gospel chorale for HIV-positive men and is looking forward to one more shot at love at age 75: “I can probably be now the best companion that I’ve ever been.” The stories these older adults are telling us are a testimony to a crucial part of the history of the epidemic; their lives today provide a window into the future of HIV/AIDS.
www.grayingofaids.org
1 of 19
Bill, a 77-year-old Chicagoan, was diagnosed with HIV in 1985. Like many gay men of his generation, Bill buried his partner in the early days of the epidemic and then waited to die himself. Instead, he has been active in AIDS advocacy work and support groups over the years, and was one of the founders of TPAN (Test Positive Awareness Network) in Chicago. Bill recently underwent chemo therapy for his second bout with non-Hodgkins Type-B lymphoma, a cancer that frequently afflicts people with HIV infection. Chicago, Illinois.
2 of 19
"In the beginning it was terrible. We were pariah at that time. You don’t want to dare tell anybody because they think terrible of you. We’re accusatory: “You’re a dirty person. You’ve done something wrong.” No, this is just another illness in life. It’s not damnation. It’s not something that God throws down at you because you’ve done something wrong. It is a physical problem that can be rectified. But you also have to realize, living with the drugs changes your life immensely. So if you can protect yourself, do so." Chicago, Illinois.
3 of 19
Bill's medication. "I hate to say, 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. Give them a little better health. Or maybe, if you get the right education, prevent them from becoming infected." Chicago, Illinois.
4 of 19
Linda, age 61, returned to her husband Thomas to take care of him after learning that he had been diagnosed as HIV-positive, although the couple was was separated at the time. He contracted the virus as an intravenous drug user. Linda is HIV-negative although she shared needles with him.
“We found out in 1990 that he was HIV-positive. I was tested, and I’m negative. And I don’t know how that came about because we used to use the same needles and everything. Cause we been together 36 years. We did everything together. There was a group of us, used to hang out together, get high together, about 50 of us... They’re all gone, they’re all dead. All of them. We are the only two left.” The Bronx, New York.
5 of 19
Thomas in the kitchen of his daughter Denise's home in the Bronx.
At age 58, Thomas has been living with HIV for 16 years since receiving his diagnosis in 1990. He contracted the virus as an intravenous drug user. For the past year Thomas has been experiencing a variety of complications related to HIV and he is now dying from multiple organ failure. Health officials in New York City report that nearly a third of all HIV-positive residents are now over the age of 50 and predict that proportion will rise to one-half in the next decade. Unlike Thomas, who enjoys the support of a large family, many older people suffering from HIV lack this type of support structure. The Bronx, New York.
6 of 19
Health officials in New York City report that nearly a third of all HIV-positive residents are now over the age of 50 and predict that proportion will rise to one-half in the next decade. "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. I’m walking around with artificial valves... I’m pieced all together. 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."
7 of 19
Thomas hold a popsicle for hydration.
"Everybody thinks that it’ll happen to the other guy. You gotta start thinking— you are the other guy. To somebody else you’re the other guy. And I thought that and then you see where it got me. And I know what’s gonna happen: I have like a day dream, I have seen myself laying there in the funeral parlor. But I can’t really complain, because I had, like, 16 years. I thank God to keep me around all that time. And I got a good life, a good wife, grandkids, kids, you know, but I mean, nobody wants to die." Brooklyn, New York.
8 of 19
Dee, 57, a resident at Broadway House, a New Jersey supportive housing residence for adults suffering from HIV-related illnesses, meticulously applies her make-up each morning. She was close to death when admitted to Broadway House a year ago. Now, between her blood pressure and her anti-retroviral drugs, she takes about 20 pills a day to keep the virus and other diseases of aging in check.
As people with AIDS are surviving longer, there is less of a need for hospice care. Instead, Broadway House was developed in the early nineties to accommodate patients such as Dee who are not ill enough to take up hospital beds, but too sick to be released back into the community. Placement in regular nursing homes proves difficult, as many institutions are weary to accept people with AIDS or a history of mental health or addiction problems. Dee has been diagnosed with mild dementia, so she won't be able to live independently. Support staff is trying to secure a placement in a transitional living facility for her, but is facing long waiting lists. Newark, New Jersey.
9 of 19
Dee experiences early stage dementia related to her HIV infection.
" I was pretty good in school. I was a cheerleader, I think. I didn’t go to college. Financially, it was hard for my parents at that time. I was a book keeper’s secretary. I liked working. It’s amazing, the things that I have forgotten. But thank God, I’m hopefully back to normal. I was much worse, boy, I couldn’t walk, I was in a wheelchair. So, I’ve come a long way. I knew so many people who have died. So sad. I thank God I’m still alive, really." Dee passed away a year after these interviews take place. Newark, New Jersey.
10 of 19
An older woman studies the instruction manual accompanying a set of condoms she has received during an HIV/AIDS prevention event at "Hispanic Unity," a day care program for seniors. The event was organized by the Broward County Health Department's SHIP initiative, the Senior HIV Intervention Program, and it featured "Los Doctores," a Puerto-Rican HIV/AIDS education musical duo formed by long term HIV survivor Louis, 51, and his wife Rosalia, 47. Educating others in the Hispanic community about AIDS by spreading a message of hope and inspiration has become their mission. A lot of AIDS messages are very clinical, so reaching people with music seemed like the perfect vehicle for having a little fun while getting across a life-saving message. While some songs focus on safe sex, others deal with stigma and rejection, teaching the audience about various aspects of living with the virus. The Curbelos openly tell others that they are sero-discordant, meaning that Rosalia is HIV-negative and Louis is HIV-positive. In Rosalia’s experience, this makes people think seriously about safe sex: “He’s positive, she’s negative, they’re married, they’re a couple, so it’s like, okay, something must be working.” Fort Lauderdale, Florida.
11 of 19
A long-time survivor of HIV, Louis, now 51, learned he was HIV-positive in 1987 when he underwent blood tests after the birth of his first child. His wife and daughter remained HIV-negative, but his marriage did not survive his diagnosis. He spent the next several years bent on self-destruction: “I believed I was gonna die, so for the next five years I didn’t do anything. I kinda destroyed my life with alcohol and drugs, because I felt: I’m not gonna let this kill me, I might as well kill myself in my way. Because I wasn’t ready to face the death of the HIV. The way they were dying, how they turned almost like skeletons, I seen too many people go like that, wasting away, like vegetables. And I wanted to make my own choice of how I wanted to go.” Instead, Louis was amazed to find himself still alive five years later. He cleaned up his act, began treatments for his HIV, and moved to Florida, where he met his second wife, Rosalia, at a support agency for people with HIV/AIDS where they were both doing volunteer work. Fort Lauderdale, Florida.
12 of 19
Louis and Rosalia's votive candles.
"[My Advocay work] keeps me going, because it gave me a new life. My past is my past. It’s funny that it took the HIV to change my life to a positive, because through the drugs and the alcohol, I wasn’t too happy with myself. I left my daughter when she was two years old. I couldn’t take that emptiness. I didn’t want her to think of me like that, like I was a dad that just didn’t care about his kid. So doing this is just something that I can hope she can be proud of me one day." Louis has since passed away from cancer. Fort Lauderdale, Florida.
13 of 19
Now 73, Sue was one of the first women in the U.S. over the age of 50 to go public with her HIV status. Diagnosed when she was 58 years old, she contracted HIV from the man she stills calls “the love of her life” after she separated from her husband. The stigma she encountered after being diagnosed, together with feeling isolated as one of very few older people in the AIDS advocacy community, led her to become a pioneering member of SHIP – the Senior HIV Intervention Project of the Broward County Health Department.
According to Sue, the stigma and ignorance surrounding HIV/AIDS are as strong today as ever: “I work in a law office twice a week. There was a woman down there who fashioned herself to be very, very brilliant, because she read so many books. And I brought some cookies down to work one day, and she went around telling everybody, don’t eat her cookies or you’ll get HIV. And that was only a year ago. So the misinformation is still there, even among educated people.” Fort Lauderdale, Florida.
14 of 19
Sue's medications, a combination of HIV medicines and drugs for their various side effects, as well as drugs for general aging-related ailments. "There’s not a day that you don’t wake up and know you have HIV. There’s not a day. 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! All these medicines attack everything in your body. It’s just like taking rat poison every day. And you’ve got to do that for the rest of your entire life?" Fort Lauderdale, Florida.
15 of 19
"Just because you’re 50 years old doesn’t mean you don’t want sex any more. When I first started this program, that’s what they thought. And women who have had a happy marriage and a good sex life don’t want it to disappear in their old age. One time we went to Century Village and we took female condoms. And they’re very expensive, had the box under the table – I walked away from the table for a minute to talk to this guy who was telling me about “THAT woman over there who had 7 partners.” But I came back and all the female condoms were gone. You know, these people, they’re young. Old people aren’t old. I’m not old. I’m 73, but I don’t think I’m old old. My body is old, but my mind isn’t.” Fort Lauderdale, Florida.
16 of 19
Larry, 62, a fifth term Illinois state legislator representing the 13rd District on Chicago’s North Side, speaks with fellow legislators. He is the state’s first openly gay and HIV-positive legislator and has often joked that his tenure comes with built-in term limits.
As a legislator, his work focuses on issues of labor and health. One favorite project: an organ transplant bill benefiting people with AIDS. Before his election as a state representative, he served as Mayor Daley’s Liaison the Gay and Lesbian community. Previous careers included being a social work administrator and a Los Angeles police officer. He retired in January of 2007.
"I ran for office, which was a pretty grueling experience. Not really knowing for sure how this HIV-thing, or being openly gay, how it was gonna manifest itself, and how people would react to it. But I had that mantra that I talked about: This is no different than the issues men and women with breast cancer, prostate cancer, cervical cancer are dealing with." Springfield, Illinois.
17 of 19
Larry has known for 20 years that he is HIV-positive. He buried his partner, Ray, at a time when it was not unusual to attend 5, 6 funerals per month: “It was early in the epidemic, I said, well, I’ll be dead within a year. For some reason, I don’t know why, I am here 17 years later, and he’s dead. I still miss him greatly. Most of my friends are dead. So many of my contemporaries are dead. There’s a whole generation that disappeared in the male gay community. Early infected, didn’t have the drugs, the treatment, the continuity of care. 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…” In 2005, McKeon became ill with cancer related to his HIV infection, and took a long time to recover from the chemo and radiation therapies. He had to suspend his HIV medications while going through the cancer treatment, and has since struggled to find a drug regimen that keeps the virus at bay with the least number of side effects." Larry suffered a stroke and passed away two years into his retirement. Springfield, Illinois.
18 of 19
Robert, now 75, at a performance with his chorale during a Memorial service concert remembering those lost to HIV/AIDS.
"The chorale was my last attempt at anything professional. It really was an incredible and exciting time, making a difference in the lives of others, as well as in my own life. To inspire men who had the virus and give them an outlet for their talents. And I think it also helped in the healing and the well-being of each individual.
And the sound was just incredible—mature voices, and they were all spirituals. It was so emotional and inspirational… But we didn’t get very far. I had to actually disband the chorale because I had become ill. Again… One illness after the other. One bout with this or that. Cancer, skin cancer, pneumonia… It has ruined my life for the last 15 years."
New York, New York.
19 of 19
"I lived more than a year and a half with measurable two T-cells. I heard all from ‘he has another year,’ ‘he has another month,’ ‘if he lives this month out, he’ll be lucky’… But today I feel like, that is certainly not the case any longer. And even if I were to die tomorrow or the next day, I don’t have that sense of doom and destiny.
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." New York, New York.