Journey Through Darkness
Award-winning, legally blind photographer
Kurt Weston talks about his journey through the darkness of AIDS and related blindness, about art and activism
by Alina Oswald


In 2005, while browsing the web, I came across a writing-and-photography contest called Unfinished Works. Intrigued by the name, I followed the link only to discover a black-and-white photograph called The Last Light. It showed a man sitting in an armchair, with his back to a large window. The daylight flooding the room wrapped around his frail body like a cape. The reflection of the dim artificial light inside the room glowed in his eyes like two embers about to burn out.

I found the photograph both haunting and intriguing. Soon, I discovered that it was the work of award-winning, legally blind photographer Kurt Weston and secretly hoped that, one day, I would be able to interview the visual artist.

Then, in 2006, on a bright sunny day, I found myself in Washington, DC, at the Kennedy Center for the Performing Arts, for the opening night of that year’s Very Special Arts show. Founded in 1974 by former U.S. Ambassador to Ireland, Jean Kennedy Smith, VSA is an international nonprofit organization showcasing the work of artists with disabilities. The exhibition, Transformation, featured Kurt Weston’s work.

One of the photographs showed Weston holding an old Nikon camera. It was the same camera he had bought in 1983 when getting ready to go back to school to pursue his second degree, a Bachelor of fine arts in photography, from Chicago’s Columbia College.

Weston’s passion for photography started with a high school photography course. Yet, in college he studied fashion merchandising at Northern Illinois University. After graduating, he landed a few jobs, none of which turned out to be what he had imagined. Yet, through it all, he realized that his passion for photography had remained intact.

So, in 1983 Weston took out school loans and enrolled in a photography program at Columbia College in Chicago. He graduated in 1985 and eventually got a job as a darkroom photographer at Pivot Point, an international fashion photography company, where he also volunteered to work with models and hairstylists, and photograph during the weekends.

One of the company’s trademarks was an industry-specific book, Design Forum. It offered information on the latest trends in hair styling techniques, news and updates from the industry’s finest hair designers, and the like. 

When working on one of those books, designers and producers realized that they didn’t have enough images and that the available images were not what they were looking for. One of the hairstylists working with Weston during the weekends mentioned the freelance photo shoots and offered to show a few images. The Design Forum producers took a look and decided to use Weston’s work to complete the project on time.

Kurt Weston became their full-time fashion photographer. But, as his career began to sore, many of his friends started to lose their battle with a mysterious virus [HIV] threatening their lives. One evening, during the summer of 1981, while watching the news, the photographer learned about “a strange cancer that seemed to be spreading in the gay community, and nobody knew where it had come from or how it was being spread.”

By 1991 the number of HIV- and AIDS-related deaths skyrocketed. Still, Weston didn’t worry. He had been feeling fine…up until October, when he started coughing. It was a persistent and exhausting cough, draining him of energy.

Not knowing what to make of it, Weston decided to see a doctor. Several doctor visits and tests later, and while feeling worse and worse with each passing day, he found out not only that he had AIDS but that he was going through his first bout of AIDS-related pneumonia. He ended up in the hospital, where the doctors told his mother that he might not make it through the night.

“Maybe there’s strength in denial,” Kurt Weston says, commenting on his mother’s inability to accept his “death sentence” diagnosis. A Lithuanian native, his mother had experienced T.B. and hepatitis, while trying to escape a war-torn Europe and come to the U.S. to start over. And she succeeded because of her survival abilities, which she believed were part of her genes.

So, in late November 1991, when the doctors told her that her son might not make it through the night, she refused to accept the grim prognosis. She had survived them all—disease, pain, loss—and she knew that her son could do it, too, because he had her genes and because, like her, he was a survivor, too.

But as he woke up in an isolation ward, hooked to humming machines, surrounded by people wearing masks and gloves, Weston didn’t feel like a survivor. He didn’t know what his future would bring him.

The photographer made it through several bouts of pneumonia; and while he continued to work full time, he kept up with his doctor’s visits and treatments. He also started attending meetings at AIDS service organizations like Test Positive Aware, which introduced him to the HIV and AIDS community.

It was at TPA that the photographer met individuals who were beating the odds and staying ahead of the virus. Their stories fueled his own desire to stay alive. To this day they’re his “guardian angels,” the early-day AIDS warriors who helped him believe that he, too, could survive HIV.

Photographer Kurt Weston and attendee at the opening of his show, REMEMBER: An AIDS Retrospective at OCCCA on World AIDS Day 2018. Photo by Alina Oswald

In 1993, a cascade of AIDS opportunistic infections started ravaging his body. But if AIDS was to kill him, the photographer was determined to fight until his last breath.

He found out about other individuals living with HIV and AIDS and who were experimenting with alternative treatments, while trying to keep themselves alive. So, in 1993, Kurt Weston founded SWAN, Surviving With AIDS Network, a grassroots group that offered a safe space for people living with the virus to share their stories of struggle and survival.

Also that year, Kurt Weston experienced the first symptoms of CMV retinitis. He was still working as a fashion photographer at the time, and he would notice flashing spots on his backdrops or see shreds of cotton and start blinking, trying unsuccessfully to make them go away. Only later he realized that those shreds of cotton were floaters and one of the first signs of cytomegalovirus which was damaging his retinas.

To try to save his eyesight, the doctors administered an IV medication, ganciclovir, through a PICC line inserted into his veins. During the following couple of years, Weston was to go through some twenty-five PICC lines.

In April of 1995, Kurt Weston received a phone call from his younger brother who was living in Orange County. His brother invited the photographer to move in with him. And since Weston loved the West Coast and visited as often as he could, he thought it to be a good idea.

Yet, it was difficult for him to decide what to pack and what to leave behind because he did not know if he was moving to California to start fresh or to die. “It’s very hard when you’re moving and dying,” he explains. “And you get rid of things that are meaningful to you, and that are part of your life, [because you don’t know how much living you have left].”

On Labor Day weekend, after an intense summer of preparations and planning, Weston moved to California. And he never regretted it because, by the mid-nineties, he had no more close friends left in Chicago. They all had succumbed to AIDS.

But the move to California was bittersweet. Weston started to attend local AIDS organizations in Orange County, where he met new people and made new friends. Also, only a few months later, by the beginning of 1996, the photographer became legally blind.

At about the same time, new, life-saving medications were becoming available through drug lottery programs. While he was still in Chicago, Weston’s doctors had entered his name in one of those drug lotteries. And he turned out to be one of the few hundred patients approved to receive the new drug.

Yet, the new medication did save his life, but not his eyesight. “I was devastated because I thought I couldn’t photograph anymore because I couldn’t see anything in focus,” he explains. “For instance, I see flesh tones, but can’t see you smile or frown; I see…like if you look at the palm of your hand. That’s what I see of a person’s face.”

To save what little was left of his eyesight and learn to navigate his new world, the photographer enrolled in programs at the Braille Institute and the Foundation for Junior Blind. He started by learning how to use a cane, work with adaptive technology, and read Braille. And through it all, he had the support of his partner, Va, “a wonderful Vietnamese man.” Va was always by his side. And when Va got sick, and then passed away in January of 1998, the photographer was by his partner’s side, too.

Va had introduced Weston to the Asian Pacific Crossroads, a local organization serving Asian Americans living with HIV and AIDS. On Valentine’s Day, the photographer happened to run into a few individuals he’d met through Va. They wanted to raise money for the organization through a fundraising project—a calendar featuring some of their members. All they needed was a photographer. And no matter how much Weston tried to explain that he was still mourning Va, and that he couldn’t see anything in focus anymore and didn’t think he could photograph anymore, they wouldn’t take no for an answer. They interpreted his insecurity as hope and decided to give him two models to text shoot with for the calendar photo project.

Weston ended up photographing for a whole afternoon, using special equipment. When he showed a few images, the Asian Pacific Crossroads decided to let him shoot the entire calendar.

“It was scary. A lot of times I would take a leap of faith and experiment,” Weston describes the process. Yet, he realized that he could still photograph. The completion of the Asian Pacific Dreaming 1999 Calendar was proof that he could.

An L.A. Times feature article covered Weston’s success. And then the Braille Institute invited him to participate in an art show at the Anaheim Museum of Art. As a result, it became apparent to him that photography could still be part of his life as fine art photography.

Weston started to create photography work that was experimental, highlighting facets of his own reality. To artistically represent his “visual disturbance,” the photographer sprayed foaming glass cleaner on a glass surface, pressed his face against it, and captured a portrait of himself. “You see my hand pushing away the foam, which is what I would love to do,” he explains, “I would like to be able to wipe away all that cotton that keeps floating in front of my eye and get a clear view of what I want to see out in the world.” The resulting images became part of his Blind Vision series of black-and-white self-portraits.

As he was regaining his health, thanks to the (then) new life-saving medications, Weston could once again attend meetings at the local AIDS organizations, reconnect with individuals he knew, and also meet new people. It was during one of those meetings that he met Thomas Nylund, a historian with a special love for Roman Catholic history and theology, and an ordained priest in the American Orthodox and Catholic Church. Father Thomas—as people came to call him—had an incredible photographic memory and was one of those people who would give a two-hour answer to the seemingly most insignificant question he’d be asked. Weston and Father Thomas became great buddies.

Around the same time, in 2000, the photographer joined a workout group at the AIDS Service Foundation (ASF) in Orange County. That’s where he met Terry Roberts. One evening, when the photographer invited Roberts to his home for dinner, Weston’s dog, Quasi (named after Quasimodo), jumped on Robert’s lap “as if to say, ‘you’re not going anywhere.’” The photographer interpreted his dog’s behavior as a sign…and Weston and Roberts have been together ever since.

When Father Thomas, who was living with AIDS and hepatitis, got sick, Weston and Roberts cared for him and visited him often. During one of those visits, they found Father Thomas sitting in an armchair with his back to a large window. The daylight flooding the room wrapped around his frail body, like a cape. The reflection of the dim artificial light inside the room glowed in his eyes like two embers about to burn out. Weston decided to capture a picture of his friend and called it The Last Light. Two days later, Father Thomas passed away.

Kurt Weston believes in the resurrection of life and art. Nowadays, the photographer continues to use his life’s journey as an ongoing source of inspiration for his work. Weston is an AIDS survivor, an award-winning artist, and also a mentor to young generations of activists and artists. He’s often invited to speak at local AIDS Walk fundraisers and to share his story of survival.

His visual art has appeared in museums and galleries in the U.S. and around the world. In 2006, Weston’s work became part of the AIDS Museum’s permanent collection in Newark, NJ. In 2012, Weston won the CNN iReport Award for Personal Story. After the award ceremony—where he was accompanied by his (then) guide dog, Ambrose—he appeared on CNN, interviewed by Fredericka Whitfield. In 2018, his black-and-white portrait photography show, REMEMBER: An AIDS Retrospective, opened on World AIDS Day at the Orange County Center for Contemporary Art (OCCCA).

Most recently, another one of Weston’s photographs, When the Shame Ends, was featured in What Unites Us and What Divides Us 2020 online international art show hosted by D.C.’s Touchstone gallery. Examined through the lens of HIV and AIDS, and most recently of COVID-19, the image becomes an example of the longevity and universality of Weston’s work. It explores the role of “embrace” as a way of communicating support, compassion, and understanding when faced with an extreme situation such as a pandemic.

There’s a kind of survival instinct, perhaps, associated with the idea of “holding on” often evoked in an embrace. It comes to life in Weston’s When the Shame Ends, a portrait that captures two young Asian men, both HIV positive, clinging to each other as if they have nobody and nothing else to hold on to. Weston created the image at the height of the AIDS pandemic, yet its symbolism speaks to the timelessness of the photographer’s work.

“When dealing with life-and-death circumstances, you start to realize what’s important to you and that certain things carry a lot more weight than others,” Weston says. “And at some point, you want to achieve something that will leave a mark on humanity. Art is a wonderful vehicle [through] which to do that.”

In 2021, images from his Neo Glam fashion photography series became part of an art exhibition at the John Wayne Airport in Orange County. In addition, a few photographs from Weston’s REMEMBER show were featured, along with the Silence = Death poster, in an episode of the New Amsterdam TV series.

This year, Weston has photography work included in the Made in California exhibition at the Brea gallery, and in the All Media 2022 exhibition [July 9 – October 8] at the Irvine Fine Arts Center in California.

Also, his short film Not Going Away is part of the Visual AIDS BROADCAST film screening series showing this summer across New York City and later this year in California.

The photographer is also working on a portfolio photo book called Losing the Light. It includes images from his Blind Vision series of black-and-white self-portraits.

Kurt Weston believes that art helps create “a consciousness shift” in people’s perception of life. Thus, through his art, he often explores new ways of capturing life and its reality. As a result, Kurt Weston’s art-making process becomes an ongoing, life-long process that continues to evolve and transform, while remaining intriguing, enthralling, and inspiring.

Visit Kurt Weston online at www.kurtweston.com.

Alina Oswald is the Managing Editor of A&U Magazine.