Document:Young reviews Callen
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1993
"Experts disagree about what is causing AIDS and how to best treat it. Seeking out diverse views will allow you to make choices that are truly informed...
"Scientific or medical truth cannot be determined in a democratic fashion. The fact that a majority agrees that something is true is certainly worth noting, but it doesn't mean you can afford not to find out why the minority rejects that view. The minority may, after all, be right.
"... The history of scientific controversy is replete with instances where heretics who spoke out against the commonsensical wisdom of the day were excommunicated, burned at the stake, tortured, ruined financially, or driven insane for saying things that were subsequently proven to be true. That's why it's so important to judge a viewpoint on its merits and not by how its proponents dress or where they went to school."
Michael Callen had what was then called GRID in 1981. A long-term survivor, he has also been one of the most active AIDS activists. He helped draw up the Denver Principles of PWA self-empowerment (see Part V), edited the PWA Coalition Newsline, and cofounded New York's Community Research Initiative. He has also been an outspoken AIDS dissident, proposing multiple causes and criticizing the prescribing of AZT.
This book focuses on PWAs who have defied official prognoses and survived AIDS for three years or more. Callen points out that there has been little or no official interest in studying survivors, and he comments that "once again, a tremendous opportunity has been missed." Nevertheless, drawing from his personal experience, his own survey of survivors, and a couple of other small studies, he examines factors that might influence survival, including active involvement in one's health care, major lifestyle adjustments, and not believing the "propaganda of hopelessness."
Much of the book is devoted to interviews with fourteen long-term survivors (chosen from the dozens known to the author). Though the medical regimens used by the interviewees vary, they share their optimism, their "grit," and a cautious attitude toward experimental drugs. Callen believes that the very low rate of AIDS survival, especially in the early years, is largely due to "the failure of the American government to do its job." AIDS official Anthony Fauci comes in for particular criticism. Medical and media fixation on AIDS as inevitably fatal is seen as a self-fulfilling prophecy, with lobbyists falling into the trap of accepting doomsday scenarios to attract funding.
One chapter is devoted to the "case against AZT," another to nineteen points of advice for PWAs, from "decide if you really want to live" and "all things in moderation" to "prophylax against opportunistic infections" and "keep an open mind about holistic or alternative approaches."
On the whole, this is one of the most hopeful, and one of the most informed, books on AIDS, written by a front-line fighter, an open-minded skeptic with a fierce dedication to his fellow PWAs.
Essential reading.
© 1993 by Ian Young
Originally published in The AIDS Dissidents: An Annotated Bibliography
Scarecrow Press, Metuchen, NJ and London, (ISBN 0810826755).
