‘Joseph had been sick for 10 years. He said he liked listening to the radio, friends would pass by, his life was rich. He died a few months later’

I shot this image of Dorika Gabriel carrying her son, Joseph, in 1997. I had travelled to their village on the Ugandan border of Tanzania, close to Lake Victoria, to photograph local responses to HIV and Aids.

At the end of the day I was taken to meet people who were living with the disease. Joseph was sitting under a shelter outside his home. As I was walking away, I turned back and I saw his mother lift him up and carry him back into the house.

I was very struck by the tenderness of that gesture and spoke to her. She told us that every morning she carried Joseph out of the house and into the shade of the shelter, and then carried him back inside at the end of the day. I felt strongly I wanted to photograph that.

They were helpful and open and I arranged to return a week later. I arrived early in the morning and knocked on the door. They were ready. I shot about three frames as Dorika carried Joseph outside. And as I did so, I knew it was going to be an important picture. After that, I sat with Joseph for a few hours, with a translator. I didn’t have a recorder, so I typed the interview on a Psion Organiser, those devices we had in the 1990s before mobile phones.

Joseph was 30 years old, and he told me he’d been sick for 10 years. “I wake up in the morning and drink my tea,” he said. “My brother washes me. When it is warm and dry like today I spend my days sitting outside my house under the shade my brother made.” He said he liked listening to the radio – music, football, news. Friends would pass by. He said his life was rich. He said he had no pain.

Joseph died a few months later. Dorika became a campaigner for better understanding of the HIV virus. At the time, it was this terrifying thing, with seemingly no treatment. It was affecting millions of people in Africa. It felt like the world wasn’t paying attention.

My own first encounter with the disease had been in 1993, photographing on the Aids wards in Middlesex hospital, London. That experience set me a journey to photograph the disease and responses to it. By the time I took this picture, I had gone with home-care teams into people’s homes; I’d photographed in hospitals, I’d shot drama projects, educational projects, activists campaigning. This image put it all together. It’s a classic image of a mother’s care – even just things like seeing all the plants in their rusty buckets, the sense of nurturing.

The picture was used many times to represent the disease in Africa, and I felt proud to have taken it. There were not enough images of HIV showing care and compassion.

That said, people did criticise my work, and justifiably. Many photojournalists are labelled victimologists, portraying people as victims without agency. And here Joseph is indeed a helpless, ill person being carried by his mother.

Beyond that I’m part of a long line of South African white, mostly male, frequently Jewish, photographers who have had at different points a deep fascination with black poverty, and because of power relations, have had very easy access to black poverty. That’s something I’ve been thinking about a lot recently. To what extent are the images you make a result of your privilege?

At the time, though, I was sincere, maybe naive, but certainly fired up about the disease. I’ve always been drawn to make work about the important things going on in the world, and that idea of photography as more than documentation, that it could be political.

A lot of my work in HIV has been rediscovered recently. Maybe it’s becoming easier for people to look at these images again. Maybe they have become more of a historical record. But HIV is still a huge issue today. It’s not a battle that has been won.

• Find more of Gideon Mendel’s work at gideonmendel.com.

• World Aids Day is 1 December.

Gideon Mendel’s CV

Facebook Twitter Pinterest Gideon Mendel in Srinagar, Kashmir. Photograph: Gowhar Fazili

Born: Johannesburg, South Africa, 1959.

Training: “I never trained as a photographer. I majored in African economic history and psychology at the University of Cape Town”

Influences: “David Goldblatt, Walker Evans, and Eugene Smith with his idea of committed photography.”

High point: “Having my Drowning World images – a project that deals with climate change – used in the recent Extinction Rebellion protest.”

Low point: “The third time I applied to Magnum, and was turned down.”

Top tip: “Make work that is important to you and uncompromising: don’t wait for people to employ you.”