Over a nine-year period I produced work for Positive Lives, a unique international photography project that supported those living with HIV/Aids. Positive Lives was established in 1993 (and was incorporated into the AIDS Alliance in 2009) by an alliance of activist organisations that wanted to challenge prevailing representations of people affected by the virus. At the time, HIV/Aids was still little understood and much feared. It was dubbed a modern plague by many in the commercial mass media. News headlines such as “Blood, Sweat and Fears” (Time, 1996) or “Deadly Turning Point” (The New York Times, January 21, 1996) were accompanied by images of bedridden, emaciated victims in the final stages of the disease, surrounded by hand-wringing relatives. Positive Lives aimed to counteract such one-dimensional portrayals by revealing the human stories behind the disease, and confronting the ignorance and prejudice that surrounded it.
The project, featuring documentary images and personal testimonies, toured the globe in the form of major exhibitions and community programmes for more than 15 years, reaching an estimated two million people.
I documented various subjects for the project, spending weeks immersing myself with each. In Thailand, I photographed patients at a monastery hospice who’d been rejected by their families, and had built their own support community, and HIV-positive orphans who lived in a children’s home. On Hong Kong’s frenetic border with mainland China, a major trading route, I documented sex workers and truckers who contracted the virus from each other, and often passed it on to their spouses or partners. In Australia, I documented a flamboyant transvestite called Vanessa who was an outspoken HIV/Aids campaigner, and a 28-year-old hemophiliac, Andrew, who had contracted the virus at age 14 from a blood transfusion. It was Andrew Knox and his story that moved and touched me profoundly.
What made my experience with Andrew exceptional was that he had invited me to “tell his story”, as he put it, and to stay with him until the virus exacted its final deadly toll. Andrew told me that he wanted to share his story with other people to cultivate a greater awareness of and understanding about the virus that had gripped his body, or more specifically his brain, and was slowly killing him. Andrew, who lived in Sydney, was suffering from Aids Dementia Complex (ADC), one of the most feared and least understood manifestations of Aids. As I was documenting Andrew, I recorded his words in my diary:
“I always thought dementia was an old person’s disease. It’s really scary. I can’t get my thoughts out or remember the words to use. My thoughts are walking away from me. My hands don’t work for me properly, I keep dropping things, walking into walls and doors. My balance is shocking. I have muscle spasms and tremors that really scare me. I just don’t know where to put myself sometimes….”
Sweet-natured and fun during his lucid times, Andrew’s dementia eventually made it impossible for him to live at home. He began to suffer memory loss, seizures and violent mood swings, as well as physical illness. He was hospitalised frequently with pneumonia. Throughout all of this, he continued his lifelong battle with bouts of hemophiliac bleeding.
Andrew moved into The Bridge in central Sydney, which at the time (1998) was the world’s only dedicated facility for ADC. There he had his own room and shared comfortable (although sometimes chaotic) living spaces with other ADC sufferers. While staff were always on hand, family joined in to care for those at The Bridge. Andrew and the other live-in patients were able to come and go in the safe neighbourhood as long as their illnesses allowed them the independence to do so. Andrew would say: “I love this place, and I know it’s the last home I’ll ever live in.”
Andrew’s acute physical and psychological disorientation progressed and he oscillated between dementia and lucidity; his violent mood swings became more frequent; and finally, during his protracted last moments, he stopped breathing. Personally for me photographing somebody as they die is a burden too much to bear. This photograph of Andrew in his final moments is harrowing, although Andrew is still recognisably ‘himself’ in a physical sense, and his family members are shown caring for him with great tenderness. I take some solace in knowing that I was fulfilling his wish of staying with him to the end and ‘telling his story’.
Andrew died on January 16, 1999.
‘Andrew’s story’ appears in the latest issue of the Al Jazeera Magazine, What this picture means to me. For more compelling human stories, download it herefor iPads and iPhones and here for Android devices.