In 1986 I was working in a project for The Shanti Project, a San Francisco–based organization established to assist people with AIDS. Through this work I became much more aware of the psychological and social problems associated with this new and puzzling disease. A year later I accepted an invitation to photograph Joseph Alexander Benko, a six-year-old boy who had just been diagnosed with AIDS. Joey had been infected with the HIV virus as a newborn through blood transfusions in January 1981.
Over the next six years, up until his death in 1993, I would meet frequently with Joey to take photographs of him as well as his parents, Linda and Larry Benko, and his older brother, David. In the process we would share many experiences together. I could not anticipate how enriching and valuable our friendship would be for me, or how much I would learn about what it means to truly be alive.
One of the many obstacles Joey had to face was the rejection of his classmates, as well as his first grade teacher, when his condition became known. But he grew to understand that their rejection was the result of ignorance and fear. It was important to Joey that people not be afraid to be around him, to touch him. Later he became an educator himself, speaking publicly about AIDS awareness at various foundations and high schools. He dedicated his life to educating people about the disease.
On December 2, 1987, the first day I went to photograph Joey, Linda met me on the corner outside the housing project where they lived. She led me through what seemed a never-ending labyrinth of hallways to their front door. As we entered the room, Joey jumped into my arms. He explained that his mother had told him I was there to photograph him so they would remember him. Then he said, “I want to photograph you so I will remember you too.” At once, we were on equal ground.
Although he did not survive boyhood, Joey grew to be very wise. He learned in a few years what it takes many people decades to know: how precious life is and how we live in the shadow of death whether we acknowledge it or not. Most of us grow accustomed to thinking in terms of tomorrow, next month, next year, without really looking at what we are doing today. Joey lived in the present, right now. Aware of the course of AIDS, he knew how important it is to live in the moment, knowing that it is all we ever truly have for certain.