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Reading AIDS

Introducing The Body Positive Book Reading Club

December 2000

Visit the health section of any large bookstore, and there are likely to be a dozen or more books on HIV and AIDS. Browse the shelves of a major library, and there may be a hundred or more. Type the words "AIDS" or "HIV" into the search box on the website for Amazon.com, and thousands of listings pop up. For a disease that is scarcely twenty years old, an extraordinary number of books have been written and published about HIV/AIDS.

Of course, many books are now outdated. And some were never very good to begin with -- badly written, badly researched, or both. Yet among the mountain of books, there are also more than a few gems to be found. That's why, with this issue, we are launching a new feature of Body Positive magazine, called "Reading AIDS: The Body Positive Book Reading Club." We may never be as big as the Book of the Month Club, or as influential as the New York Times Book Review, or as popular as Oprah's book club. But we do hope to bring interesting and informative books to the attention of you, our readers, that you might otherwise miss.

This issue is fortunate to be able to highlight two such books. The first is The Wages of Sin: Sex and Disease, Past and Present by Peter L. Allen, Ph.D., a cultural critic and former associate professor of French, comparative literature, and media studies at Pomona College in Claremont, California. The second is Youths Living with HIV: Self-Evident Truths by G. Cajetan Luna, M.A., who is the executive director of the San Joaquin AIDS Foundation in Stockton, California. You'll have the opportunity to read all about these books, plus some excerpts. New books will be added from time to time in upcoming issues of the magazine. To ensure that books are accessible, we've chosen only ones that are reasonably priced (generally $25 or less, usually in paperback) and that are still in print and thus available either through bookstores or on-line booksellers, and in many cases also at libraries. Not every person will be interested in every book we feature, but we will try to select enough of a variety that many of you will find something of interest.

A unique feature of the Body Positive Book Reading Club is that we will be including introductions written by and excerpts chosen by the authors or editors of the books themselves specifically for the readers of Body Positive. These introductions are intended to let you know some extra background about how and why the books were written, and to provide the author's or editor's direct insight. (When authors or editors are unavailable, or deceased, an expert on a particular book or subject may write the introduction.)

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These authors and editors (or other experts) have also agreed to respond in writing to questions, comments and queries from readers right here in Body Positive. This will be an important part of the book club process, and we hope that if a particular book sounds of interest to you, that you'll go out and read it and then write in with your thoughts or questions. Also, if you are the author or editor of an HIV/AIDS-related book (or an expert on a book) that you think would be a good choice for the book club, please let us know.

Please contact us at:
Body Positive Book Reading Club
19 Fulton Street, Suite 308B
New York, NY 10038
Fax: 212-566-4539
E-mail: Bodypos@aol.com

We hope to have a lively conversation through the magazine. If there's interest, we would also be happy to arrange for in-person discussion groups to meet in New York (so let us know if that's something you'd like to be involved with). Happy reading -- and let us hear from you!


The Wages of Sin: Sex and Disease, Past and Present

By Peter Lewis Allen
Chicago: University of Chicago Press
2000, Cloth. 202 pp. $25.00

Facing the arrival of bubonic plague, one seventeenth-century English writer called it "a broom in the hands of the Almighty, with which he sweepeth the most nasty and uncomely corners of the universe." Sound familiar? I thought so. The hyper-religious rhetoric of modern-day conservatives like Jerry Falwell and Jesse Helms, it turns out, has a long and sorry heritage.

I started working on The Wages of Sin in the early 1990s. I wanted to understand why so many Americans were playing the "blame-the-victim" game with AIDS. At the time, I was a college professor with a specialty in classics and medieval literature, and a natural bent for trying to understand things by exploring their historical roots. The American response to AIDS, it turned out, was a remarkably rich field to explore.

The urge to explain sickness by attributing it to sin -- especially sexual sin -- goes way back to the early days of Christianity. From the very beginning, Christians were wary of the body and its dangers: even Christ had proclaimed that, after the Resurrection, "men and women do not marry: no, they are like the angels in Heaven" (Matthew 22). Sickness was often viewed as a sign of divine disapproval, and the combination of sickness and sex was theological dynamite.

The Wages of Sin traces the evolution of this concept by looking at a series of diseases, each tied to a specific historical period. Authorities in the Middle Ages, for example, often viewed lepers as sexual sinners, and condemned them to wander the earth in solitude, cut off from all society. Performing a religious ceremony over the patients, who stood in freshly dug graves, priests pronounced them dead to the world. Spouses were free to re-marry; no further human conversation was allowed. Lepers were sometimes even buried outside the churchyard for fear of contact with the bodies of the uninfected dead.

Syphilis was quickly condemned as "the just reward of unbridled lust" when it hit European shores in the 1490s. Syphilitic patients were treated with red-hot irons and noxious mercury 'cures' that made their teeth fall out, their throats close up, and their kidneys shut down. The remedies doctors prescribed for wealthy patients were often as painful and deadly as the disease. Poor patients, on the other hand, were simply tossed out of charity hospitals to die on their own.

The strangest and most disturbing sexual "disease" the book discusses is "onanism," or masturbation. From about 1700 to about 1950, doctors and the public alike were convinced that to spill one's seed was disgusting, immoral, and fatal to boot. John Harvey Kellogg, the nineteenth-century American doctor who invented the cornflake, warned that "the most loathsome reptile, rolling in the slush and slime of the stagnant pool, would not bemean itself" by masturbating. To cure or prevent this filthy practice, patients willingly swallowed strychnine and hydrochloric acid, ate ground glass, tied their genitals up in spiked harnesses, and even underwent circumcision and clitoridectomy (sometimes with anesthesia, sometimes without). At the recommendation of the U.S. government, parents tied their babies' arms and legs to the sides of their cribs so that the infants would not be "wrecked for life" by self-abuse. Pretty grim stuff.

While some moralists were lashing out at the sick, however, others saw it as a religious duty to care for them and cure them. The tradition of Christian healing goes just as far back as the tradition of loathing and fear. Most of the New Testament's miracles, for example, were miracles of healing. In the fourth century, a Christian saint, Basil of Caesarea, founded the first hospital in the Western world. This is the tradition out of which grew such leaders as former Surgeon General C. Everett Koop, the conservative Christian who opened America's eyes to the need to respond to AIDS. This is the paradox I tried to solve in this book: how religion could foster both condemnation and care, both hatred and love.

By writing The Wages of Sin, I hoped to accomplish several things. One was to lend my voice to the fight against AIDS, and to create a memorial to my friends and lovers who have died. Another was to explore and understand the tangled relationship of religion and medicine, sex and sin. But beyond all this, I wanted to open a dialogue on these crucial topics between religious Americans (especially conservative Christians) and the gay community and people with AIDS. Each side needs to understand what this twenty-year epidemic has meant to the other, for better and for worse, and to see what we can learn from the other's point of view. In America and, even more so, in the rest of the world, the AIDS crisis is far from over. In the era of the Ebola virus and HIV, we need to recognize that other unknown diseases inevitably lie in wait. Next time, with any luck, we'll be a little more ready to respond to them as medical problems, not moral ones, and maybe we can make it a little faster to a cure, with less suffering along the way.

I suspect that many of the readers of Body Positive have run into some of these attitudes along the way. The presence of anti-AIDS prejudice in America (including the medical profession) was well documented by studies published in the Journal of the American Medical Association in the late 1980s and early 1990s. Some of you may want to get some of these experiences off your chests in a discussion; others may be interested, and perhaps even in some way relieved, to find out why the Bible-thumpers said the things they did.

Personally, I'd be interested to hear whether anyone has been able to enter into a dialogue with religious and political conservatives about AIDS, or even link AIDS and religious belief in any way. It seems to me that it might be possible to cross over some of the breach between the two sides of this argument. It might be beneficial. It would certainly be interesting; it would certainly be difficult. I'd like to hear about this, and also about whether you'd like to use The Wages of Sin to start some conversations, both within the AIDS community and outside of it.


Excerpts

  • No one can bear witness to more than a small part of the story of AIDS. My part began with [my ex-lover Stewart Telfer], then expanded beyond him into the historical exploration that became this book. The lessons I learned in my own life, through my relationship with one individual, turned out to hold a greater truth: that, in its fights about how to respond to AIDS, American society was re-enacting a drama that had been written centuries before. I learned that there was a long tradition in the West of seeing disease as God's punishment for sin -- especially sexual sins. I learned that every era had sorry tales to tell about how the sick and dying were condemned for their illnesses, and made to suffer as much in mind and heart as they were suffering in their bodies. I learned of the deep-seated conflicts in the great traditions of medicine and religion -- the conflicts between compassion and condemnation, healing and blame. And I learned that despite America's apparent modernity, many people in this country -- including many of those in power -- were convinced that the healthy were saved and the sick were damned. All of these things, I found -- history, conflict, condemnation -- directly affected the course of this new epidemic, and took an enormous and tragic toll on Americans' health and lives (p. xv).

  • I decided to see whether I could find a trail between [the Middle Ages and the present] -- a tradition of beliefs, attitudes, and examples that had something in common with lovesickness and AIDS. I searched through many libraries and hundreds of books, and ultimately assembled a cluster of diseases that, in their day, had been closely linked with sin. The results of that search form the chapters that follow -- on lovesickness and leprosy in the Middle Ages, syphilis in the Renaissance, bubonic plague in seventeenth-century England, medical treatments for masturbation in the eighteenth and nineteenth centuries, and, finally AIDS. A frightening but fascinating story emerges from the pages that follow: the story of the idea that these diseases were punishments for sinful behavior. The only sure way to avoid sickness, this thinking went, was to avoid sin. As the English author Thomas Dekker advised his countrymen in 1630, in the face of bubonic plague, "Only this antidote apply: Cease vexing Heaven, and cease to die." The consequences of this belief have been grave: the sick have often been subjected to society's scorn and fear, and prevention has often been neglected, on the principle that it was immoral to teach people how to avoid a disease transmitted by something they should not have been doing in the first place (p.xix).

  • Protestants enthusiastically linked sickness with immorality: Calvin warned Geneva that the new and strange diseases showed clearly that "God is more angry than ever" with the sins of human kind. A century later, in England, Edward Lawrence (1623-1695) phrased the same sentiment in even more inflammatory language. Through the filthy sin of whoredom, he fulminated, "men and women sacrifice their health, estates, names, bodies, and souls to their stinking lusts, carrying a filthy and guilty soul in a rotten body whilst they live, and shutting themselves out of heaven and into hell when they die." The torments of the body merely showed the public the inner degradation of the soul (p. 48).

  • Even as plague faded away, Europe -- and the European colonies in the New World -- became traumatized by the fear of a new phenomenon that they were convinced gave rise to an almost endless number of physical, psychological, and moral evils. The medical establishment claimed that masturbation led to daily symptoms that ranged from lassitude to consumption (tuberculosis), blocked or burning urine, stupidity, paralysis, spontaneous gangrene, apoplexy, and even death. After having been diagnosed with masturbatory insanity, men and women by the dozen were locked away in mental asylums. Patients reported that they had eaten ground glass and locked themselves into suits of armor to restrain themselves from the dreaded habit. Even today, when official silence on the subject reigns in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, popular attitudes reveal that masturbation still provokes embarrassment, guilt, and nervous laughter; Americans teasingly warn one another that solitary sexual indulgence will cause blindness, acne, or sweaty palms. Psychological and sociological surveys reveal that, for reasons they do not entirely understand, 50 percent of Americans still feel guilty about masturbating. Few know that the old wives' tales they joke about were the medical dogma of an earlier era, and that their guilt and anxiety have a long and honorable pedigree (p. 79-80).

  • If [condoms] were manufactured only for men, it was because only men were supposed to want sex. "As a general rule," explained the Paris-trained English urologist William Acton (d. 1875), "a modest woman seldom desires any gratification for herself. She submits to her husband's embraces, but principally to gratify him; and were it not for the desire of maternity, would far rather be relieved of his attentions." More assertive women frightened authorities social, civil, and medical. French suffragist Hubertine Auclert (1848-1914), opined a police report, "is believed to be suffering from madness and hysteria, a disease that causes her to look upon men as her equals." Women who transgressed the proscribed sexual boundaries were actively forced back behind the lines. In fact, argues cultural scholar Eve Sedgwick, gynecology and psychiatry were developed in good part as the medical profession looked for new ways to control female self-abuse.

    [Some] doctors tried to prevent masturbation by stimulating the genitals in painful ways; others tried to prevent sensation, or deaden it. Some put ice on their patients' sexual organs; others administered cold-water enemas. Doctors and parents fastened young infants into strait-jackets and chastity belts. Everett Flood, an American physician, wrote an article in 1888 boasting of the success of a plaster cast he had produced to keep a young patient from masturbating: "the boy's genitals might have been in the next county for all the sensation his hands could communicate." Dr. Deslandes, too, was in favor of restraints of all kinds. In boarding schools, he advised, children's hands and feet should be tied up at night. He lauded another physician's device -- a "strait-waistcoat, which was laced behind, and was furnished in front with a silver apparatus, to contain the genital organs, and having only an opening for urine." The drawbacks of such contraptions were hardly to be compared with their benefits: though the apparatus might irritate the genitals and their edges cause "deep excoriations . . . they are often useful and ought not to be neglected" (p. 98-99).

  • Many conservatives were as eager to blame homosexuals for the AIDS epidemic as their forefathers had been to assert that syphilis was the fault of sailors, Neapolitans, prostitutes, or the French. AIDS was "nature's form of retribution," political columnist and perennial presidential candidate Pat Buchanan explained, for the "immoral, unnatural, unsanitary, unhealthy, and suicidal practice of anal intercourse." Jerry Falwell's Moral Majority Report put the same sentiment into a punchier phrase: "What gays do to each other," it noted, "makes them sick and, more and more frequently, dead!" The note these commentators sounded was partly a warning bell, and partly a peal of jubilation at seeing their views confirmed: the wicked truly were punished in this life. But beneath the approbation was a heavy undertone of fear. The Moral Majority Report warned that AIDS was turning up in "exponentially increasing numbers of defenseless heterosexuals" who happened to cross the sinners' deadly path. Buchanan saw AIDS emanating from the perverted and tainted bodies of the nation's homosexuals and drug users like the ripples in a pond. The virus, he wrote, spread from the guilty to the innocent, from the dirty city streets to the sacred suburban home, from "the needles of IV drug users, the transfusions of hemophiliacs, and the bloodstreams of unsuspecting health workers [and] prostitutes [to] lovers, wives, children." By 1987, Jesse Helms could reduce the idea to a simple, if inaccurate, principle: "Every AIDS case can be traced back to a homosexual act" (p. 123-124).

  • All of us, individually and collectively, carry with us the losses and sufferings of our prior experience. I know that, at least for me, these will always color my life: people I loved are gone, and all the newfound friends and newborn children in the world can never replace them. But I have had the extraordinary fortune to survive this most recent plague, and I hope that a part of what I have learned to value in life, and of what I have learned in writing this book, will become something I can give to others. Like the past, loss is irreversible, but it is not in vain as long as we can give it meaning. If I can help to increase courtesy, charity, and compassion in the world by writing about people I have known and people who died centuries before I was born, if I can increase understanding by writing about intolerance, then I believe that I will have done what was given me to do: to take the abundant kindness and love that have come my way and use them to help myself and others carry out the Jewish -- and human -- moral obligation of tikkun olam, healing a broken world (p.162).

  • Youths Living with HIV: Self-Evident Truths

    By G. Cajetan Luna
    New York: Harrington Park Press (Paperback)
    $18.95, 195 pp. 1997

    In the early 1980s when I started working with disenfranchised, homeless and gay youths, they were generally thought to be at risk for a variety of health challenges. Surprisingly from the hindsight of 2000, few AIDS interventions at that time and into the early 1990s targeted these specific groups. Little was known about their sexual behaviors and few systematic investigations had been conducted on the life circumstances of gay and lesbian youths, or those "club kids" who frequently used methamphetamines. Very little information existed on the lives and behaviors of heterosexual or parenting youths living with HIV and AIDS.

    This book, Youths Living with HIV: Self-Evident Truths, was written to provide this information. It was the result of a National Institute of Drug Abuse (NIDA) funded study conducted in three sites, on both coasts, and over two years to qualitatively document the risk behaviors and lifestyles that led to HIV infection in youth. I welcome the opportunity to find new readers for my book, and to discuss the underlying, or related, issues.

    A team of interviewers conducted extensive audiotaped interviews with youths living with HIV and or AIDS. Transcriptions of the interviews were made. We produced a number of papers for scientific or professional journals on the results. Subsequently, effective behavioral interventions targeting youths were developed by the Principal Investigator, Dr. Mary Jane Rotheram-Borus and her colleagues at Columbia University and at UCLA. During the later stages of the NIDA study, it became clear to me that the rich detail that we had gathered, including the poignant and insightful first hand experiences of youths living with HIV would be lost in written products targeting only AIDS experts or scientists.

    I found vulnerability and rationales in the youths' free-flowing recollections. There was truth. The other papers we produced on the "issues" seemed to me, removed from the young people themselves. Their voices oftentimes went unheard, were muted or intentionally silenced. My primary objective in producing the book was to provide a way for their voices to be heard. An ethereal quality to the issues they discussed and identified as important was evident. It was clear to me that the challenges they recalled and faced within their life contexts had less to do with their HIV infections or to living with AIDS than to circumstances that occurred in coming to an understanding of themselves and comfort with their sexual preference or activities. For new readers, a number of underlying issues while not explicitly discussed in the book, were implicit and are important for me to emphasize.

    First, our understandings of why young people engage in self-harmful acts traditionally have been described in terms of their risk-taking behaviors. One developmental task shared by all young people is the ability to weigh risk. Substance use, unprotected sexual activity, and contact sports all involve risk. For the informed or experienced, risk-taking involves a calculation of the costs and benefits of certain behaviors. We consider and internally ask ourselves, what will happen if we do what we would like to do? Is what we can gain, worth more than what we could lose? Can we survive the consequences? Obviously, some activities are riskier than others are, and conscious self-determinations are made. All of the youths whose lives we studied took risks, many with little concern for, or knowledge of, the consequences.

    Unfortunately, according to recent research reports from San Francisco the number of HIV infections are increasing among young gay men. High-risk behaviors are becoming more frequent. This is discouraging, but understandable and even explainable, especially if you consider the reasons and rationales for these behaviors. For those who know the consequences of unprotected behaviors, some are willing to risk infection, and subsequently bear the responsibility for their actions, including years of taking antiviral medication, and the associated costs.

    Second, since the beginning of the AIDS epidemic, succeeding generations of youth and young adults have come of age, and many since the mid-1990s have been targeted with prevention information since their early adolescence. Many have changed or altered their behaviors as a result of focused outreach. For others, the provision of HIV/AIDS prevention information has not resulted in behavioral change. Many of the youth and young adults who we interviewed were more characteristically described as risk-seekers than as risk-takers. They did not consider the outcomes of their behaviors, but instead sought independence, and new and exciting experiences regardless of the consequences. Peer pressure and hormonal influences including the adrenaline rush characteristic of youth, clouded informed decision-making.

    Third, health interventions infrequently targeted or reached these young people, especially those who believe they have nothing to gain or lose. Nevertheless, the rationales behind their risk-taking and risk-seeking behaviors are often self-evident and easy for people to understand if they will only listen. Why is it important to distinguish between risk takers and risk seekers? It is important because the success of behavioral interventions depends on tailoring the interventions to individuals and groups whose behaviors we seek to change.

    I would like to learn from readers infected in their adolescence about their own experiences and from service providers and recipients about successful interventions targeting youth. What approaches can be successful with youths such as those whose lives are presented in this book? What are those turning points or life events experienced in youth that can bring about behavioral changes, and why?

    I hope readers living with HIV will find some of their own circumstances and struggles accurately represented. I hope those uninfected will find the seeds for understanding. I believe the truths young people speak in this book will remain relevant long after HIV and AIDS have passed. I did not intend the book to be a historical documentation of the disease as it affected a specific population. Instead, I wanted to present, in their words, the obstacles that young people face in self-discovery, and the reasons for their high-risk behaviors. This made the telling all the more meaningful for me.


    Excerpts

  • "Making Up for Lost Time": David
    David re-entered law school and expected to graduate within a year. He was a member of a Gay Young Republicans Club. Since his family was upper middle class, he was conscious of his position of relative privilege and the accompanying responsibilities. That self-consciousness and his realization of the plight of others contributed to his new identity.

    "Since this has happened to me, there are so many different people who are dealing with this disease, some of the new friends that I've met have augmented my old friends. I have seen people from different backgrounds with different needs. I think for me as a gay male, I never came out even to myself, really, as gay until this disease shocked me into realizing who I was. I really had a lot in common with a lot people that I didn't think or didn't want to think I had things in common with."

  • "The Courage of Healing": Marie
    Marie later remembered that she had sex with Evan on two occasions, not just one. The night she believed she was infected, she had condoms in the dresser drawer next to her bed. He didn't volunteer and she didn't insist that he use them. Eventually, Marie confronted Evan about her HIV infection.

    "I went to his house and I told him I was HIV-positive, and I said, "I'm not going to try to blame you and say you gave it to me, or I gave it to you -- I don't know which, but you need to go get tested." He said, "Oh man, and I was just starting to feel better, too." And I said, "What do you mean?" And he said, "Well, I have had diarrhea every day for, like a year now." And he showed his arm and he had shingles. . . . I told him that he needed to go get tested. I gave him all this information, card, phone number and everything. Two or three months later I went back to his house to see if he got tested. I was dying to know. . . . I went to his house and I opened the door and he's in bed with this girl."

  • "That Will Be Extra": Ethan
    Ethan continued to take money from Christopher, but did not live with him nor encourage reestablishing a relationship. In hindsight, he identified variations in relationships with johns and the psychological effects of these relationships on him over time.

    "In other words, you pay me to do something that you want me to do to you sexually, and I'll do it. But if I spend more than three days with you, I consider that something different. There's sex and then there's sex. There is sex for money, and there is sex because you like the person -- that's the kind of sex that Christopher and I had. But after two or three years, four or five years of this, I became one big emotional wreck. I didn't know if this person loved me. I didn't know if this person liked me. I didn't know if this person wanted to have sex with me and just dump me -- you know, give me money and not see me the next day. That was my little world, and I was real upset because I didn't like it. I didn't like the fact that I had to go to the streets to pull a trick and that I had to turn to this person for emotional help for anything."

  • "My Track Record": Mark
    Mark described his life as "running on autopilot." He did not feel he controlled his destiny but was resigned to his fate, which he believed was characteristically to "mess up." He described his unwillingness to change his life situation and patterns in a pessimistic way.

    "Well, the reason I stay like this is because, as far as I can see, I'm going to die anyway. Why bother getting my shit together? I'll probably die before I do it [laughs]. . . . It's not the tea, to sit around wondering when I'm going to croak. Tomorrow, I could be in the hospital with tubes coming out of me."

  • "Everything Will Fall Into Place": Rose
    Rose supported herself with money from a substantial legal settlement she received following [an] accident. She found out that she was HIV-infected years later while in high school.

    "When I went to high school, a nurse said I should go to this clinic so I went. First I tested for hepatitis, because my boyfriend had it so they tested me. But I had a different type than he did. He had A, and I had B. So I started seeing the doctor for that. Then he asked me if I wanted to take the HIV test. I thought, 'Yeah, okay.' I really didn't think anything of it [laughs]. They told me I was positive and I said, 'What?' I was shocked and depressed, and they put me in the hospital for a couple of weeks. They thought I might kill myself or something [laughs]. I thought about it, but I could never go through with it because I don't like taking pills anyway! Then they thought I might cut my wrists, but I can't see myself doing any of those things. While I was in the hospital, I was real depressed so I called up my boyfriend and he was all worried [laughs]. He thought he had to get himself checked out. I told my mother and then I told my best friend. They were all supportive of me. I was lucky."


  • Back to the December 2000 Issue of Body Positive Magazine.



      
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