Mark Feldman at AIDS Candlelight March, 1983. Photo: Mick Hicks Sunday morning December 18 the New York Times published my letter to the editor of the newspaper’s Book Review.* Three weeks earlier I had read the cover-page review of David France’s new work, How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS. The article was written by Andrew Sullivan, the English author, editor, and blogger. I took exception to the credit that Sullivan, and apparently France, gave to a New York AIDS activist for pioneering the simple but powerfully transformative phrase “Person with AIDS” that originated with a San Francisco AIDS pioneer, Mark Feldman.
I knew Mark Feldman well; over time we became lovers. I first met him several weeks before the day in late November 1982 when he learned he had AIDS, one of the first fifty men in San Francisco diagnosed with the new disease. At the time it was called “the gay cancer,” a devastating description for a 30-year-old who had learned to live openly, proudly as a gay man. The progression of the disease was rapid for him. He reeled from confirmations of not only Kaposi sarcoma but also of the “gay pneumonia,” followed by a ra ft of breakdowns of his immune system and the ravages of experimental treatments.
Feldman loved an audience and enjoyed being a leader in city and community affairs. He took hold of the calamity of AIDS in his own life and became one of San Francisco’s first speakers to describe his own diagnosis. He revealed his condition to members of Sha’ar Zahav, the city’s community of gay and lesbian Jews. He spoke to community groups, undertook dozens of interviews for TV, radio, and newspapers. He almost appeared on the front cover of Newsweek as the “AIDS cover boy” with his dog Drew. I was with him in San Francisco’s Dolores Park on the chill winter day when he posed repeatedly for the publication’s photographer with the city skyline in the background. (Another San Franciscan, Bobbi Campbell, and his lover got that cover instead). Feldman wanted to counter the fear – more accurately, the panic – about the disease and its transmission.
One thing that bothered him the most was to be called an “AIDS victim.” He once mocked a report in a local gay publication for tossing the term his way. “I died and no told me,” he wrote in his journal. He soon took the offensive. He was not a victim, and, unless he was in a hospital or seeing his doctors, he was not a patient either. He coined the term Person with AIDS in defiance. He asserted his own identity. He refused to be passive or to succumb to despair. He well knew his prognosis but he would proceed on his terms, as much as he was able.
In my letter to the editor, I briefly described the June 1983 AIDS forum in Denver at which health professionals and AIDS advocates gathered to share information and set policy. A few men with AIDS from San Francisco joined others from New York and elsewhere in the country. The San Franciscans persuaded the larger New York delegation to take a step beyond their gains at home where they adopted the AIDS patient description. Michael Callan, profiled in David France’s book and in Andrew Sullivan’s review, was one of the New Yorkers at Denver. By the end of the conference, he and others declared a People with AIDS identity at the closing session. I was present then but Mark Feldman was not. He had wanted to attend and had purchased plane tickets, but he died a week earlier.
A New York friend of Feldman’s, Phillip Lanzaretta, was in Denver. He was another man living with AIDS. He told the conference audience, “Language not only reflects thought but shapes it.” People with AIDS became the identifier-of-choice among AIDS advocates across the U.S. and worldwide. The description was too powerful and determined to be dismissed as political correctness. Federal, state, and local governments and the pharmaceutical industry were forced to grapple with the demands from empowered AIDS activists across the country.
I wrote to the New York Times to set the record straight. Mark Feldman deserves the recognition.
*My letter to the editor: http://www.nytimes.com/2016/12/16/books/review/letters-to-the-editor.html?_r=
I knew Mark Feldman well; over time we became lovers. I first met him several weeks before the day in late November 1982 when he learned he had AIDS, one of the first fifty men in San Francisco diagnosed with the new disease. At the time it was called “the gay cancer,” a devastating description for a 30-year-old who had learned to live openly, proudly as a gay man. The progression of the disease was rapid for him. He reeled from confirmations of not only Kaposi sarcoma but also of the “gay pneumonia,” followed by a ra ft of breakdowns of his immune system and the ravages of experimental treatments.
Feldman loved an audience and enjoyed being a leader in city and community affairs. He took hold of the calamity of AIDS in his own life and became one of San Francisco’s first speakers to describe his own diagnosis. He revealed his condition to members of Sha’ar Zahav, the city’s community of gay and lesbian Jews. He spoke to community groups, undertook dozens of interviews for TV, radio, and newspapers. He almost appeared on the front cover of Newsweek as the “AIDS cover boy” with his dog Drew. I was with him in San Francisco’s Dolores Park on the chill winter day when he posed repeatedly for the publication’s photographer with the city skyline in the background. (Another San Franciscan, Bobbi Campbell, and his lover got that cover instead). Feldman wanted to counter the fear – more accurately, the panic – about the disease and its transmission.
One thing that bothered him the most was to be called an “AIDS victim.” He once mocked a report in a local gay publication for tossing the term his way. “I died and no told me,” he wrote in his journal. He soon took the offensive. He was not a victim, and, unless he was in a hospital or seeing his doctors, he was not a patient either. He coined the term Person with AIDS in defiance. He asserted his own identity. He refused to be passive or to succumb to despair. He well knew his prognosis but he would proceed on his terms, as much as he was able.
In my letter to the editor, I briefly described the June 1983 AIDS forum in Denver at which health professionals and AIDS advocates gathered to share information and set policy. A few men with AIDS from San Francisco joined others from New York and elsewhere in the country. The San Franciscans persuaded the larger New York delegation to take a step beyond their gains at home where they adopted the AIDS patient description. Michael Callan, profiled in David France’s book and in Andrew Sullivan’s review, was one of the New Yorkers at Denver. By the end of the conference, he and others declared a People with AIDS identity at the closing session. I was present then but Mark Feldman was not. He had wanted to attend and had purchased plane tickets, but he died a week earlier.
A New York friend of Feldman’s, Phillip Lanzaretta, was in Denver. He was another man living with AIDS. He told the conference audience, “Language not only reflects thought but shapes it.” People with AIDS became the identifier-of-choice among AIDS advocates across the U.S. and worldwide. The description was too powerful and determined to be dismissed as political correctness. Federal, state, and local governments and the pharmaceutical industry were forced to grapple with the demands from empowered AIDS activists across the country.
I wrote to the New York Times to set the record straight. Mark Feldman deserves the recognition.
*My letter to the editor: http://www.nytimes.com/2016/12/16/books/review/letters-to-the-editor.html?_r=
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