Reading AIDS

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Of course, many books are now outdated.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.)

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.

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.