Living Proof: Courage in the Face of AIDS

Living Proof: Courage in the Face of AIDS

by Carolyn Jones

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Carolyn Jones's vivid and life-affirming portraits capture people from all backgrounds — children and grandmothers, men and women of all races — living with HIV and AIDS.
It is estimated that over one million people in the United States would test positive for the Human Immune Virus, and many others are already suffering from Acquired Immune

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Carolyn Jones's vivid and life-affirming portraits capture people from all backgrounds — children and grandmothers, men and women of all races — living with HIV and AIDS.
It is estimated that over one million people in the United States would test positive for the Human Immune Virus, and many others are already suffering from Acquired Immune Deficiency Syndrome. A common-and harmful-misconception holds that AIDS is an instant death sentence but, in fact, testing positive for HIV does not mean immediate illness. Carolyn Jones has collaborated with George DeSipio, Jr., and Michael Liberatore (co-founders of the project), and the seventy-three people who volunteered to pose for these photographs in an inspiring effort to change the way we think about AIDS. Jones's compelling portraits have the power to profoundly alter perceptions about this disease, and about the way we all live and die. AIDS poses challenging questions that we must each grapple with, whether healthy or not. These captivating pictures illustrate the self-confidence and wisdom of ordinary people coping with an extraordinary fate, facing their mortality, questioning their priorities, and living life to the fullest. Their energy, courage, and dignity in the face of such adversity offer a vital lesson in how to embrace life, day by day. Their faces and their stories are proof that AIDS doesn't look like anyone — it looks like, and ultimately is, all of us.
Design Industries Foundation for AIDS (DIFFA) is the sole recipient of the royalties from the sale of Living Proof. For additional information regarding Living Proof and the Design Industries Foundation for AIDS, please call DIFFA, (212) 727-3100.

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Product Details

Abbeville Press, Incorporated
Publication date:
Product dimensions:
9.37(w) x 9.30(h) x 0.64(d)

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Foreword by Ian McKellen

Looking at this collection of photographs for the first time, you ask yourself, "What do these people have in common?" At first glance, the answer might seem trivial. These ordinary-looking people—so like our friends and acquaintances—reveal few hints of home, income, or lifestyle. Maybe they just share a birthday or a passion for ice cream. Have they, perhaps, all met the president or the Pope or each other? That might be it: they could all live in the same town. Would anyone ever have guessed that these people share a virus? Take a second look, then a third.

Each of them was invited to a completely bare studio, where there were no distractions in the background. In the photographs, they clearly wear their own clothes, exhibiting a relaxation that those black-and-white ads for jeans never quite achieve. These are not models, they are not on display. They do, however, all seem to want to be photographed. No doubt Carolyn Jones put them at ease. But they haven't just been captured by her loving camera; they have captivated her lens. Their charisma has put them in control. That is what vitally connects them—not just the shared virus but a self-confidence about the disease and about life; they communicate a tremendous sense of exhilaration. These are not ordinary people after all.

Before HIV/AIDS had an official name, all we heard were confusing rumors. The virus was called the "gay cancer"; it came from monkeys, from Africans, from Haitians; it had escaped from a madman's laboratory. None of it seemed real enough to be our personal concern. By the time the media admitted that it was the story of the century, we were being encouraged tothink that the disease was a punishment and that it had, somehow, been created by its carriers. That can be true of any plague, if we identify the carrier as ignorance and poverty and a belief that nothing can be done.

At the same time we read about "innocent victims": hemophiliacs infected by "poisoned" blood transfusions, babies infected by drug-addicted mothers. But as HIV/AIDS spread—especially throughout major metropolitan areas—more and more of us had friends who got sick, and famous people died. AIDS became a challenge. Money was raised for research, support groups were formed to provide care, and lobbies were created to persuade. Everyone, whether HIV positive or negative, had a story to tell. What moves me most about Carolyn Jones's portraits is that they tell no detailed stories, but they reveal everything about her subjects' inner lives. Miraculously, she has photographed people's souls.

Nationalism flares up, famine rages, and the ozone layer burns. Yet, when history eventually passes judgment on our apocalyptic age, surely the decisive question will be: "What did they do about AIDS?" What did the United Nations do, across the world? What did the politicians do, nationally and locally? And the churches and commerce and the media? What did any of us do?

Even now, during the second decade of the pandemic, it's clear that too many of us have done too little. But blame and anger are only part of the story. The whole truth of AIDS can't be found in the inertia of government, in the exaggerations of the media, or in the bigots' lies. AIDS has unleashed great power in individuals and in groups—among people who have learned how to care and counsel, who have organized their consciences.

At the heart of the matter are the people who know the most about living with this disease—the people in this book. The truth about HIV/AIDS shines from their faces, bodies, hands, feet, and smiles, which have captivated the camera for our enlightenment.


Living Proof was born in November 1991, when I sat by George DeSipio's bedside in New York Hospital. We were lovers, and he was recuperating from his first bout of pneumocystis (AIDS-related pneumonia). He was infuriated by the lack of positive imagery in the media regarding people with AIDS. George felt that without a life-affirming view of how individuals deal with this illness, many people with AIDS might give up hope for ever living a full life. Swearing that if he recovered he would find a way to present a constructive portrait of what living—really living—with AIDS was all about, George outlined the concept that became our project. We decided to organize an exhibition that would illustrate that an AIDS diagnosis is not an immediate death sentence.

I am an art director, so my first duty was to find a photographer who would share our vision and capture our message on film. We needed an artist who was not only technically superb, but who also had the heart and soul to create images that would both comfort and motivate those who were desperate for a ray of hope. Instantly, I thought of Carolyn Jones. I had worked with Carolyn for years, and I believe she is the best portrait photographer around. And I love her. Her interest in her subjects is all-consuming, and her manner is wonderfully reassuring; many a friendship has been formed in her studio. I confess I was overwhelmed with guilt about asking Carolyn to tackle a project of such proportion, yet when I presented the idea to her, she answered yes without a moment's hesitation.

We agreed that our best approach would be to do a series of large-format black-and-white portraits of everyday people, people who were outstanding only in their commitment to making every minute count, in refusing to surrender to AIDS. Simultaneously, Carolyn and I decided to ask our sitters to pose with whomever or whatever kept them going strong. And so our odyssey began. We canvassed New York City for willing subjects, and in April 1992, we began to shoot. Carolyn photographed and interviewed each candidate and relayed their stories to both George and me. As she worked, something beautiful began to bloom—not just the fruit of our efforts, but an attitude of caring that enveloped everyone who became involved. Photo assistants, caterers, film processors, hair and makeup artists all volunteered long hours; media people gave us exposure with very little coercing; and people with AIDS came forward to be photographed in numbers far greater than we had ever imagined. The parade of beloved friends, family, and cherished objects that were brought to the studio was truly touching, and the resulting images told stories of passion, wisdom, and tenacity. When it came time to title our efforts, I couldn't think of anything more appropriate than Living Proof, because that is what this project provides: proof that people with AIDS are vital and spirited individuals courageously facing an overwhelming adversary. And proof that people have not forgotten how to care.

Throughout the next two years, we never lost faith in our mission or in its original intent. Sadly, some of our subjects are no longer with us, among them George DeSipio, Jr., whose vision launched this project and whose optimism and dignity are expressed on these pages. Their strength continues to inspire and educate others. Jason Snipe, a student at P.S. 234 in New York City, saw our first gallery presentation at the World Trade Center on World AIDS Day in 1992. His teacher had brought his sixth-grade class, and she asked them to write to Carolyn about Living Proof. "I liked your portraits because they showed that people with AIDS are as normal and regular as anyone else. If somebody hadn't told me that these people had AIDS I wouldn't have known. They seemed so happy. I wish them the best, and thank you for showing people that they are as normal as us."

Author Biography: A fashion and portrait photographer for Esquire, Interview, and Italian Vogue, among many other publications, Carolyn Jones participated as a photographer and driver in the Paris/Dakar Rally and Bruce Jenner's Pride in America Rally, and made the television documentary "Women . . . on Family." She has her studio in New York City, where she lives.

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