My life in books

I started reading Jonathan Engel’s The Epidemic - A Global History of AIDS, because I am still looking for information about the spread if HIV that’s not focused primarily on the US, or on the origins of AIDS, which tend to end once the virus reaches American soil.

The story of how the epidemic started, how it spread through west and central Africa, and how it reached the US is pretty clear to me at this point, as are many of the details of the battle to identify the caused and contain the epidemic in the US. But I am interested in what’s happened, what is happening, in other parts of the world too, and that information seems harder to find in the popular literature.

Engels is an academic with a background in the history of public health policy and administration. His history of the AIDS epidemic tends to view the issues through this lens, rather than the research/epidemiological and political/journalistic perspectives of other books I have recentky read on this topic.

Engels bypasses the early years of the epidemic’s history, when it was primarily confined to certain regions of Africa, and begins his account with the appearance of AIDS-related opportunistic infections among the members of the gay communities in New York and San Francisco. Engels moves the narrative forward with some dispatch, although he spends perhaps a little too much time lingering over somewhat titillating descriptions of bathhouse sexual activities. His account of the events of the early years of the epidemic in the US is mostly consistent with the more detailed accounts of authors such as Randy Shilts and David France, though clearly penned by someone whose perspective is situated outside of the gay community, but he also touches on aspects of the public health efforts not covered in those more narrowly focused books, such as the response of the US military and the prison system to the threat of AIDS.

I did find several aspects of Engel’s narrative of the epidemic in America problematic. Despite the fact that little funding was made available for research, and the Reagan government seemed unable to even say anything about the disease for far too long, Engel repeatedly states that the funding was adequate and he seems to think that homophobia played no part in government decisions and actions. I suspect that in this, he has taken public announcements made by administration officials at face value rather than investigating to see if promises of funding were followed through with, or allocated appropriately, as one thing that has been consistent in other accounts is statements by researchers on the ground that the money was never there, or came too late and too little.

He also tends at times to use judgmental language in discussing the spread of AIDS in the gay community, referring at one point to “strange and bizarre sexual practices.” This despite his comments elsewhere in the narrative about the need for and indeed, the history of, non-judgmental decision making in public health, where the populations served are often those stigmatised by public opinion. He speaks against homophobia expressed against the gay community, while, perhaps unwittingly, sometimes shows glimpses of such attitudes himself.

On the other hand, Engel devotes, relatively speaking, more attention to the issues facing the black and Hispanic communities, where IV drug use was a significant risk factor, than some other chroniclers, and directly references the solidarity shown by some lesbians, who were in many ways one of the population groups at least risk of contracting the disease.

I also found somewhat troubling his tendency to dismiss the potential for HIV infection “escaping” into the general heterosexual beyond the risks to the partners of IV drug users. As research into how patterns of sexual behaviour has shown, a shift toward more concurrent relationships among the non-IV using heterosexual population could tip the balance far more easily than he suggests. Given the known fact that HIV infection is greater among the black heterosexual population in America, it would be interesting to know if this is indeed due to greater IV drug use and a greater tendency to deny homosexual behaviours among men, as Engel suggests, or if the black population in America, like that in Africa, is more likely to follow a pattern of concurrent sexual relationships.

When Engels turns his attention to the global presence if AIDS, his reporting echoes the kinds of misinterpretations of behaviour that other writers have noted. He focuses on the “highly sexualised” nature of African societies and the “promiscuity” and “insalubrious sexual mores” of African peoples as reasons for the prevalence of HIV infection among heterosexuals in Africa, touching briefly on the issue of lower rates of male circumcision and failing to mention the different patterns of sexual relationships - concurrent rather than serial relationships - found among heterosexuals in Africa and America. As in his descriptions of sexual practices among some elements of the gay community, I had the feeling that he was engaging in a degree of sensationalism, and overlooking the historical conditions that led to the situations he discusses, from dislocation of family life to poverty and lack of medical care.

Engel also looks at the development of the HIV epidemic in Asian countries. He identifies IV drug use, and heroin in particular, as the most significant pathway of infection, with sex tourism and prostitution also playing a role in certain countries, most notably in Thailand.

Engel dies make two very useful points in his summary. The first is the importance of educating and empowering women in the ongoing struggle to contain AIDS. If women - and especially sex workers, though Engel does not make this point explicitly - are able to negotiate safer sex with their partners, then the spread of HIV in the population at large is virtually stopped. Unfortunately, doing this on a global scale is an enormous task involving the eradication of many widespread attitudes toward women and sexuality in culture around the world.

He also reminds us that HIV is a fragile virus, and can be stopped by a few simple behaviours - safer sex (including universal use of condoms except between fluid-bonded sexual partners), safer injection drug behaviours, and screening of donated blood products. Again, to bring this about isn’t easy, especially among poor IV drug users, although decriminalisation and safe injection sites would be a start.

All in all, I was disappointed with the book. Despite calling itself a global history of the epidemic, relatively little attention was paid to Africa or Asia, and almost no information provided about the spread of the disease in Europe or in Central and South America. The issues in the Americas of HIV infection in indigenous populations were completely ignored, and you’d think HIV never reached Australia based on this discussion. There are other flaws as well, which I have noted above. I can’t recommend the book, even as a general summary of the epidemic in North America.

Continuing my latest 'project' - bringing myself up to date on the global AIDS epidemic, the history, the science, and the realities of life with HIV - I picked up a book I'd seen recommended in several articles on AIDS narratives, Helen Epstein's The Invisible Cure: Why We Are Losing the Fight against AIDS in Africa. I was particularly looking forward to comparing Epstein's views with those expressed by Craig Timberg and Daniel Halperin in Tinderbox, which also addressed the specific issues and conditions surrounding the fight against AIDS in Africa.

Epstein is an American writer and journalist. She is also a molecular biologist and has worked as an independent consultant specialising in public health in developing countries for organisations as diverse as The Rockefeller Foundation, Human Rights Watch and the Population Council. Her career as as a molecular biologist working on the development of an AIDS vaccine took her to Uganda, where she conducted research. Though she was unsuccessful in making any progress on the quest for a vaccine, her experiences in Uganda and later research in other countries served as the basis for this book on AIDS in Africa. The book is partly a personal narrative and partly an exploration of the specific conditions surrounding the AIDS epidemic in Africa.

As Epstein notes in her Preface, the way that the AIDS epidemic has developed in Africa differs in certain key dimensions from its progress in other areas.

"The worldwide AIDS epidemic is ruining families, villages, businesses, and armies and leaving behind an immense sadness that will linger for generations. The situation in East and southern Africa is uniquely severe. In 2005, roughly 40 percent of all those infected with HIV lived in just eleven countries in this region—home to less than 3 percent of the world’s population. In Botswana, Lesotho, and Swaziland, roughly a quarter of adults were infected, a rate ten times higher than anywhere else in the world outside Africa."

Epstein's narrative is an attempt to identify the reasons for the scope of the epidemic in Africa. In terms if the early spread of the disease, and the conditions which facilitated its continued growth and the difficulties in designing effective treatment and education programs, Epstein appears to have come to some of the same conclusions as Timberg and Halperin, particularly on the role that colonialism and globalisation have played in the social disruptions that allowed AIDS to flourish. She says: "... its spread has been worsened by an explosive combination of historically rooted patterns of sexual behavior, the vicissitudes of postcolonial development, and economic globalization that has left millions of African people adrift in an increasingly unequal world. Their poverty and social dislocation have generated an earthquake in gender relations that has created wide-open channels for the spread of HIV."

Further, she suggests - as do Timberg and Halperin - that projects and programs imposed from outside the communities by people with little understanding of African life and society are unlikely to be successful.

"Like many newcomers to Africa, I learned early on that the most successful AIDS projects tended to be conceived and run by Africans themselves or by missionaries and aid workers with long experience in Africa—in other words, by people who really knew the culture."

However, Epstein focuses primarily on the causes and consequences of major differences in the epidemiology of the disease in Africa when compared to other areas where the disease has reached epidemic proportions.

"In other world regions, the AIDS epidemic is largely confined to gay men, intravenous drug users, commercial sex workers, and their sexual partners. But in East and southern Africa, the virus has spread widely in the general population, even among those who have never engaged in what health experts typically consider high-risk behavior and whose spouses have not done so either."

It is these significant differences in the pattern of AIDS epidemiology in Africa that make fighting the disease so much harder. Harm reduction policies that have worked well in other countries have had little success in stemming the rate of new infections, because the behaviours that lead to transmission and the populations affected are not the same as are seen elsewhere. Further, the connection between HIV infection and behaviours often seen as immoral or criminal - prostitution, anal sex, intravenous drug use - tend to convey an attitude of shame, which limits communicators' ability to convey a message if harm reduction behaviour to ordinary people who are not part of a high risk population.

"... in this book, I suggest that outside of Uganda and Kagera, health officials misunderstood the nature of the AIDS epidemic in this region, in particular why the virus was spreading so rapidly in the general population. As a result, the programs they introduced were less effective than they might have been and may have inadvertently reinforced the stigma, shame, and prejudice surrounding the disease.

Much of the stigma and confusion surrounding AIDS has to do with its common association with perceived 'irresponsible' or 'immoral' sexual behavior."

This sense of shame associated with AIDS may well have ben intensified by the cultural influence of colonialism and Western racist attitudes toward Africans. A prevailing racist narrative, traceable to the earliest reports of Europeans visiting sub-Saharan Africa, is that of the hypersexual African. Education and prevention programs designed in the West and imported to Africa were influenced by assumptions that AIDS in Africa was spreading so widely because of extreme promiscuity. Not only did this result in programs that would widely miss their mark, but in sone cases it generated resistance among Africans, highly sensitive to the perceptions of Westerners, leading them to downplay or deny the severity of the epidemic because of its association with sexual immorality. "In a speech given at the University of Fort Hare in 2001, [South African President] Mbeki railed against those who were 'convinced that we are but natural born promiscuous carriers of germs, unique in the world. They proclaim that our continent is doomed to an inevitable mortal end because of our unconquerable devotion to the sin of lust.' "

Indeed, Epstein found that in many areas, discussion about AIDS is virtually non-existent, and many people acted as if it was not an issue in their communities. People refuse testing, deny their positive status, pretend that deaths of friends and family are from other causes. In South Africa, where rates of infection are among the highest in the world, an entire multi-million dollar educational and social marketing campaign, called loveLife, and aimed at reducing high-risk practices among youth, rarely if ever mentioned the term AIDS. In many cases, Epstein was told that this silence is due to the fact that AIDS has been presented as a disease of prostitutes and criminals. To admit that you are HIV positive, or that someone in your family is, is to admit gross personal immorality and invite shaming, social isolation, and even violence.

The truth, however, is that in Africa, unlike most other regions, AIDS predominantly affects people in the general heterosexual population, particularly women who have never engaged in what are commonly seen as the high risk behaviours. Many HIV-positive Africans have had few sexual partners, and most of their sexual relationships have been long-term, based on some degree of emotional commitment, and no more prone to unfaithfulness than relationships conducted by Westerners. The difference which increases the risk of infection for heterosexual Africans is a cultural one - in many areas of Africa, the pattern is not one of serial monogamy, but of concurrent polygamous relationships.

"... what many people—from policy-makers, to public health experts, to ordinary African people at risk—did not realize is that most HIV transmission in this region results from normative sexual behavior, practiced by large numbers of people. It’s not that African people have more sexual partners, over a lifetime, than people in Western countries do—in fact, they generally have fewer. However, in many African communities, both men and women are more likely than people in other world regions to have more than one—perhaps two or three—overlapping or “concurrent” long-term partnerships at a time. A man may have two wives, or a wife and girlfriend, and one of those women may have another regular partner, who may in turn have one or more other partners and so on. This “long-term concurrency” differs from the “serial monogamy” more common in western countries, and the casual and commercial “one-off” sexual encounters that occur everywhere. But long-term overlapping relationships are far more dangerous than serial monogamy, because they link people into a giant network that creates a virtual superhighway for HIV.

Concurrent sexual partnerships have strong cultural, social and economic roots in East and Southern Africa, and this has made fighting HIV very difficult. Fifteen years of vigorous condom promotion in many African towns and cities has had little effect on the epidemic, probably because most transmission occurs in long term relationships in which condoms are seldom used. As family planning experts have known for decades, people use condoms mainly in casual and commercial relationships, and inconsistent condom use offers poor protection against either pregnancy or STD transmission in long term relationships. Urging African people to abstain or be faithful has its limitations too, because most people are faithful already, if not to one person, then to two or three. Many of those at highest risk of infection are the faithful partners of men or women with only one other trusted long-term partner; others are in mutually faithful relationships, in which one partner had concurrent partners in the past."

Epstein sees the pattern of multiple concurrent sexual relationships as the primary reason that AIDS in Africa is not primarily a disease of high risk groups, but a disease affecting the general population, most of whom are neither promiscuous nor engaged in what is normally recognised as high risk activities. The reasons for these concurrent relationships vary widely. In some communities, polygamy is still the norm, such that each man has multiple wives. In some cases, if the man is a migrant worker, he may also have a girlfriend in his place of work - and because he cannot financially support both his wives and his girlfriend, she may have a second lover as well. At home, one or more of his wives may have a longterm clandestine relationship with one of the many unmarried young men who cannot yet afford a bride price.

In urban areas, many women engage in transactional relationships - they agree to be someone's girlfriend in return for gifts or some financial support. A young man with some income to spare may have such relationships with several women at the same time. One or more of these young women may have a second lover, either to augment her financial situation or to 'pay back' her first boyfriend for his infidelities.

Until recently, education programs focused on the kinds of high risk behaviours identified as key means of transmission in other regions, and did not discuss concurrent relationships as a risk. Further, prevention education focused on condom use. But because these programs did not take into account the realities of sexual behaviour in many areas of sub-Saharan Africa, such programs did little to reduce harm in the relationships most likely to spread infection.

"The condom campaigns were intended to encourage frank discussion about sex among normally reticent African populations and reach out to high-risk populations with the message that casual sex was nothing to worry about as long as condoms were used. But it is possible to imagine how they might have had the opposite effect. By associating AIDS with beer drinking, premarital sex, prostitution, and—in the case of the boxing glove and basketball ads—womanizing and rape, the lusty condom ads might well have clashed disastrously with local sensibilities concerning decency and self-respect and further inflamed the prejudice, denial, and rumormongering that have featured so strongly in the AIDS epidemic, and in virtually all epidemics since biblical times. 'The campaigns were totally wrong,' said Nkosazana Ngcobo, who works with a South African organization that helps orphans. 'The message was you had to be a prostitute or a truck driver to get AIDS.' "

One thing that runs through many of these patterns of concurrency is the role played by poverty, particularly among women, and by the concentration of work for men in geographically distant areas, which results in partners being separated for long periods of time and thus seeking out secondary relationships for comfort. Epstein does not hesitate to place much of the blame for these economic inequities and dislocations on colonialism, globalisation, and the policies of Western development and investment organisations such as the World Bank:

"The reasons why sexual behavior had been so slow to change in response to HIV in many developing countries were complex and mysterious. ... It is also possible that people in communities that have been broken by war, migration, and continuing economic hardship will be slow to take HIV awareness messages seriously. It is also possible that improving the social conditions that make the poor vulnerable to HIV is difficult when their fate is sometimes in the hands of remote economists, officials, and businessmen."

In the first section of the book, Epstein reports on the reasons she sees behind the rapid spread of AIDS in most of sub-Saharan Africa. She then turns, however, to look at one area where infection rates declined, without significant access to Western AIDS programs or anti-viral pharmaceuticals. Initially, the spread of HIV infection in Uganda and the adjacent Kagera region of Tanzania was rapid, fueled by border conflicts between Uganda and Tanzania in the 1970s, which resulted in mass movements of soldiers and civilians, and attendant prostitution. But by the late 1980s, the prevalence of AIDS had fallen dramatically, even as it was rising in surrounding regions.

The phenomenon has been studied and many explanations have been put forward for this drop; Epstein attributes it at least in part to something she calls 'collective efficacy':

"It seemed to me that what mattered most was something for which public health experts had no name or program. It was something like “collective efficacy”—the ability of people to join together and help one another. Felton Earls, the sociologist who coined the term, was trying to explain varying crime rates in American cities, but the phenomenon is present everywhere there is a spirit of collective action and mutual aid, a spirit that is impossible to measure or quantify, but that is rooted in a sense of compassion and common humanity.

During the 1980s and early 1990s, while people in most African countries were ignoring the AIDS crisis, hundreds of tiny community-based AIDS groups sprang up throughout Uganda and Kagera to comfort the sick, care for orphans, warn people about the dangers of casual sex, and address the particular vulnerability of women and girls to infection. Yoweri Museveni’s government developed its own vigorous prevention campaigns and the World Health Organization provided funding, but much also came from the pockets of the poor themselves. Their compassion and hard work brought the disease into the open, got people talking about the epidemic, reduced AIDS-related stigma and denial, and led to a profound shift in sexual norms. This process was very African, but it was similar in many respects to the compassionate, vocal, and angry response to AIDS among gay men in Western countries during the 1980s, when HIV incidence in this group also fell steeply."

Epstein also notes that "... the people in this region understood earlier than others that in this part of Africa, AIDS was not just a disease of prostitutes, truck drivers and other stigmatized high-risk groups." The post-Amin government of Yoweri Museveni undertook a serious education campaign that featured frank talk about sex and popularised the slogans "Love Carefully" and "Zero Grazing" - encouraging a reduction in concurrent relationships. A strong feminist movement brought about legal and social changes that empowered women to assume greater personal autonomy in sexual relationships. But at the time, Western AIDS workers and researchers dismissed all this.

"Through the 1980s and 1990s, officials from the World Health Organization, USAID, and other development agencies largely dismissed Uganda’s AIDS programs. 'It seemed like chaos,' Gary Slutkin, a WHO official who worked in Uganda in the late 1980s, told me much later. 'For many of my colleagues, the problem was there was no theory behind Uganda’s approach.' Public health programs were supposed to be “rational,” “budgeted,” and targeted at those groups thought to be most at risk. They were not supposed to be a free-for-all. But what WHO officials did not understand at the time was that there was a theory. It just wasn’t their theory. The intimate, personalized nature of Uganda’s early AIDS campaigns—the open discussions led by government field workers and in small groups of women and churchgoers, the compassionate work of the home-based care volunteers, the courage and strength of the women’s-rights activists—helped people see AIDS not as a disease spread by disreputable high-risk groups or 'others' but as a shared calamity affecting everyone."

In recent years, the frank campaigns based on reduction of partners have disappeared. In their place, abstinence-only programs operated by evangelical Christian organisations and funded by a US government opposed to any other preventative approaches have become standard. Shame and stigma are increasingly directed toward 'immoral' AIDS sufferers. And the prevalence of AIDS in Uganda is no longer falling.

Epstein concludes her book with an examination of the kinds of locally designed and operated programs that may help to alleviate suffering and change behaviours, and how these are often undermined by programs designed and funded by Western organisations. Ultimately, she says, there is a place for both, but each must be allowed to do what it is best suited for.

"The failure of so many donor programs has left many with the mistaken impression that when it comes to behavior change, “nothing works”. But a growing number of initiatives ... are working, sometimes with words alone.

However, words alone are not enough. The billion-dollar aid agencies such as USAID, the World Bank and the Bill and Melinda Gates Foundation must continue to make condoms and counseling and testing services as widely available as possible, and should also continue to extend the offer of AIDS treatment to all who need it. But they should be aware that these programs, though vitally important, are unlikely to bring the epidemic under control on their own. They also need to do more to support programs that promote a sense of solidarity among all those who care about the disease. Too many donor programs have divided people—rich from poor, old from young, HIV positive from HIV negative, “moral” from “immoral.” Microfinance programs, home-based care and orphan programs, women’s rights programs and other initiatives that are truly locally conceived and controlled need to be expanded. This must be done carefully and in good faith; episodic, self-serving efforts to boomerang funds back to donor agencies themselves can be worse than useless, as can opportunistic “projects” spontaneously generated in response to new donor funds.

The African AIDS epidemic is partly a consequence of patterns of sexual networking that have evolved in response to the insecurity of living in a rapidly globalizing world that is leaving the continent behind. Therefore, the industrialized countries should also reexamine their policies in trade and foreign investment so that African nations can compete on fairer terms in the global economy."

Epstein's familiarity with Africa, gained through years of research into public health issues in multiple areas if the continent, makes this book an invaluable resource tor understanding what has gone wrong with the fight against AIDS in Africa, and what can be done to set it right.

How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS by David France is at once a personal recollection and a journalistic history of the AIDS epidemic in the US and the struggles of gay activists to force government and institutions to mobilise efforts and resources to combat the disease.

France, a journalist and gay man who lived through and reported on the issues as they happened, deftly portrays both the sluggish and at times callous response from the medical establishment and government agencies and officials, and the dedication and unrelenting activism of the gay community. His scope covers both the events and the people involved in identifying and fighting the disease from its earliest days, presenting vibrant portraits of the doctors, patients and activists as he unfolds the story of the epidemic's growth.

France's book looks at the work of doctors outside the establishment agencies - the CDC and the NIH - who, often gay themselves, or working with predominantly gay men in their practices, saw the early signs of the epidemic. Even before the first cases of Kaposi's sarcoma and PCP, doctors were noticing unique health concerns among gay men. One such doctor, Joe Sonnabend, who volunteered at the Gay Men's Health Project as well as having a private practice which was centred on treatment if venereal diseases, had seen anomalous medical problems in gay men for years prior to the outbreaks of KS and PCP - and suspected that it was connected to sexual activity.

"Unusual cases of protozoan infestations of the gastrointestinal tracts of gay men had risen 7,000 percent in the previous six years and were now so common that a new diagnosis was officially coined, gay bowel syndrome, recognized by the McGraw-Hill manual Colorectal Surgery, an industry standard, and the Centers for Disease Control alike. There appeared to be concomitant epidemics of cytomegalovirus and Epstein-Barr virus, and a bizarre incidence rate of lymphadenopathy—knobby and swollen lymph nodes, which one would expect to encounter infrequently. Sonnabend diagnosed lymphadenopathy in 40 percent of his patients, a consequence, he believed, of the body’s reaction to various other venereal infections. That same causal link could also have explained the simultaneous preponderance of enlarged spleens, low white blood cell counts, and low blood platelets."

It was Sonnabend who would use his previous research experience with interferon and immune system function to provide the first evidence suggesting that there was an infection agent behind the unusual symptoms and diseases now being seen across the country. Ironically, Sonnabend would go on to advocate the position that it was promiscuous sex, especially receptive anal sex, that weakened the immune system and allowed that rapid development of opportunistic diseases.

France details the early confusion over the cause of AIDS, and the difficulties that proponents of both the over-taxed immune system theory and the unknown infectious agent theory faced when they made the obvious recommendations that reducing the number of partners, making choices about which sex acts one engaged in, and using condoms - the beginning of the 'safer sex' approach to limiting the spread of the disease - might increase one's chances of avoiding the disease. Sexual liberation had become too ingrained as both a way of life and a symbol of gay liberation for this approach to be accepted for the first few years of the epidemic. It wasn't until the summer of 1983 - two years after the KS clusters began appearing - that activists in both New York and San Francisco published safer sex guides that finally brought about voluntary changes in sexual behaviour in the gay communities of America.

Focusing primarily on the personalities, organisations, and actions of New Yorkers, France recounts the events that led to the formation of such organisations as the Gay Men's Health Crisis, GLAAD, the Lavender Hill Mob, PWA Coalition, AmFAR and ACT UP. His narrative follows the work of the key activists involved in these organisations, their lives, conflicts, and in many cases their illnesses - the pressures of living with AIDS and their intense desire to live, even for just a few more years, being for many the driving force behind their activism.

One of the major threads that runs throughout France's narrative is the struggle for action on drug research, clinical trials, and inexpensive means of production and distribution. The primary government agency with responsibility for pharmaceutical development was the NIAID - the National Institute of Allergy and Infectious Diseases, a part of the NIH network - and it had prioritised AZT treatment over other possible treatments, including approaches that sought to extend life by preventing or treating the main opportunistic diseases that people with AIDS were actually dying from. They refused to run trials on the effectiveness of such prophylactic measures as Bactrim for PCP. When trials on new drugs were run, recruitment of test subjects was strangely difficult to manage despite the vast numbers of PWA desperate to try anything that might help them - partly due to extremely strict conditions of qualification, and partly due to virtually non-existent attempts at outreach to the community for trial subjects. Another key issue for activists was the requirement by the FDA for formal double-blind trials with a control group given placebos. Given the extreme fatality rates for AIDS, in situations where a drug had demonstrated effectiveness in patient settings, this could mean the deaths of most of the control group during the course of the trial. But the FDA refused to accept 'lesser' evidence of effectiveness. Another area of activists' attention was the fight to get the cost of drugs such as AZT - at one point one of the most expensive drug available - reduced.

The story of AIDS activism is also the story of a hew kind of relationship between the medical ad pharmaceutical industry and the people it supposedly serves. By educating themselves and agitating for representation in decision-making in both the regulatory and corporate arms of the industry, activists not only pushed forward research that led to effective and sustainable treatments for AIDS, but established a model for other communities bound by the fight against other diseases.

France's book sweeps one up into the struggle, humanises the participants, and, ending as it does with the introduction of the first generation of protease inhibitor drugs that gave those who survived the early years a real future, leaves one wondering, what comes next. It's a fascinating and compelling book.

Jason Rosenhouse's Among the Creationists: Dispatches from the Anti-Evolutionist Frontline is an interesting look at the culture of creationists from the perspective of an outsider - a mathematician and atheist - who has spent time observing and interacting with creationists.

This book has three main purposes. It is a memoir recounting some interesting experiences I’ve had socializing with people whose worldview differs greatly from my own. It is also an explication of the beliefs and attitudes that are common in the anti-evolution subculture. And it is a discussion of certain questions about the relationship between science and religion that arose naturally through my experiences.

Rosenhouse structures his account around his personal experiences in visiting specific sites - from "creation museums" to bookstores - and attending pro-Creationism conferences, both to see the way that "creation science" is presented within the Creationist community, and to engage with actual creation believers.

Rosenhouse's approach in this book is not to "prove" evolution, or "disprove" creationism through recounting the scientific evidence for evolution, though he does present a reasoned account of the evidence for the former and the errors made in asserting the latter. Rather, his primary goal is to describe and critique the nature of creationist arguments and the Biblical Christian worldview they are derived from, and explain why the concept of evolution is such a threat to that worldview. Another aspect of his argument focuses on the general lack of understanding of science and the scientific mindset that seems common to most advocates of creationism, a lack which results in most arguments either presenting a completely false summation of the scientific evidence, or setting up strawdogs based on misunderstanding of scientific data and conclusions.

In the process of reporting on his experiences with both "Young Earth" creationists and those who propose Intelligent Design, Rosenhouse discusses the history of Christian opposition to the concept of evolution and how that has manifested in American judicial and educational history - as well as examining the positions of those who have attempted to reconcile Biblical Christianity with evolutionary theory. In this undertaking, he covers a great deal of theological ground, often making his points and illuminating contradictions by the juxtaposition of quotations from both modern creationists and Christian thinkers from the pre-Darwin era on the one hand, and scientists, progressive theologians, philosophers and historians on the other.

What I found particularly interesting about Rosenhouse's work is that, where other science-minded critics of Creationism have turned first to the scientific evidence of evolution to discredit the claims of Creationists, Rosenhouse mounts a significant critique based on the interpretation of Biblical texts, demonstrating the problems in arguing Creationism from a literal reading of the Bible. He also examines arguments that have been made attempting to reconcile allegorical and other ahistorical readings of the Bible with the evolutionary record and its implications for the nature of humanity. Ultimately, he demonstrates that many of the basic tenets on which traditional Christianity is based, from the special relationship between God and man, and the idea of God as omniscient, omnipotent, and the source of all good, are seriously threatened by the scientific understanding of evolution.

Lisa Diamond is an Associate Professor at the University of Utah and a self-identified feminist scientist. Her primary field of research lies in the realm of the psychological and biobehavioral processes underlying intimate relationships and their influence on emotional experience and functioning over the life course. Her book Sexual Fluidity: Understanding Women's Love and Desire discusses her results of some of her research in this area.

Diamond begins with an overview of current prevailing assumptions about love and desire - "that an individual’s sexual predisposition for the same sex or the other sex is an early-developing and stable trait that has a consistent effect on that person’s attractions, fantasies, and romantic feelings over the lifespan." She goes on to note that these assumptions are largely based on male experience because most research into sexuality has been conducted on men and adds that new research (including her own) conducted with women suggests that there is another dimension to sexuality in addition to such elements as identity and orientation, and that this dimension - sexual fluidity - is considerably more marked among women.

Sexual fluidity, quite simply, means situation-dependent flexibility in women’s sexual responsiveness. This flexibility makes it possible for some women to experience desires for either men or women un- der certain circumstances, regardless of their overall sexual orienta- tion. In other words, though women—like men—appear to be born with distinct sexual orientations, these orientations do not provide the last word on their sexual attractions and experiences. Instead, women of all orientations may experience variation in their erotic and affectional feelings as they encounter different situations, relationships, and life stages.

Looking at differences in men and women, she posits that the process by which sexual orientation is formed is different in men and women. In discussing the formation of sexual orientation in general, she argues that it arises from a combination of biological and cultural factors - that biology (genetics and other biological factors) create the predisposition for one or another orientation, but that culture plays a significant part in determining whether and how that predisposition is expressed. Introducing the role of sexual fluidity in this process, she argues that

... sexual fluidity should strengthen situationally influenced pathways to female same-sex sexuality, it should correspondingly dilute—but not completely cancel out—the overall evidence for biological contributions to female sexuality. The evidence for biological contributions to male same-sex sexuality, in contrast, should be stronger and more consistent.

It is currently accepted that the various pathways to the development of a same-sex orientation differ in their effects on males and females, and there is often lower correlation between existence of a biological marker and development of a same-sex orientation in women; further, expression of a same-sex orientation also differs in males and females.

For example, whereas many gay men recall childhoods characterized by gender-atypicality, feelings of “differentness,” and early same-sex attractions, fewer les- bian/bisexual women recall such experiences. Women also show greater variability than men in the age at which they first become aware of same-sex attractions, first experience same-sex fantasies, first consciously question their sexuality, first pursue same-sex sexual contact, and first identify as lesbian or bisexual.

Diamond is careful to distinguish sexual orientation, sexual identity and sexual fluidity.

Fluidity can be thought of as an additional component of a woman’s sexuality that operates in concert with sexual orientation to influence how her attractions, fantasies, behaviors, and af- fections are experienced and expressed over the life course. Fluidity implies not that women’s desires are endlessly variable but that some women are capable of a wider variety of erotic feelings and experiences than would be predicted on the basis of their self-described sexual orientation alone.

In particular, she distinguishes between the influence of sexual fluidity on sexual behaviour and the experiences associated with a bisexual identity:

By now, it should be clear that though the concept of fluidity overlaps with the phenomenon of bisexuality (since fluidity, by definition, makes nonexclusive attractions possible), they are not the same things. Whereas bisexual- ity can be conceived as a consistent pattern of erotic responses to both sexes, manifested in clear-cut sexual attractions to men and women (albeit not necessarily to the same degrees), possessing a potential for nonexclusive attractions (or, as we have seen, finding the “idea” of same-sex contact appealing even if you currently have no same-sex desires) is clearly different.

Diamond's own research is, of course, the centerpiece of the book. She discusses in considerable detail her 10 year longitudinal study with women who identified as one of the following: lesbian, bisexual, heterosexual, or "unlabled."

In general, the conclusions Diamond draws from her research suggest several distinct differences from the generally assumed theories (i.e., theories based primarily on research among male subjects) of the construction of sexual identity and the patterns of sexual behaviour. Diamond's findings suggest that sexual fluidity in women:

1. results in a greater tendency toward changes in sexual identity
2. leads to increased willingness to acknowledge the potential for future change in their attractions and relationships as they age.
3. leads to a greater prevalence of nonexclusivity - the possibility that they might experience attractions to or relationships with both sexes.
4. implies that early sexual experiences do not predict later ones.

It is important to note that Diamond is not equating the potential for change in identity with voluntary or external influences; she points out that change does not imply choice or control. She is careful to show that the findings of her research into sexual fluidity do not suggest or support any of the following interpretations:

1. that all women/people are bisexual
2. that there is no such thing as sexual orientation
3. that sexual orientation is a conscious choice
4. that sexual orientation can be changed either by personal intention or external influence such as reparative therapy

Following several initial chapters devoted to summarising her research and how her theory of sexual fluidity explains the differences between what women experience in terms of sexual identity formation and sexual behavior, and what current theories predict, Diamond goes on to explore her findings and their implications for the study of sexuality, particularly the sexuality of women, in greater depth.

I must say that as a woman who has identified as bisexual for most of her adult life, after an adolescent period of identifying as a lesbian, much of what Diamond theorises feels "right" in examining my own identity changes, attractions and sexual experiences. Whether this will be true for other women is a question to be answered by time and further research into women's sexuality.

Life's been too much of a bitch for me to keep on writing about books much, but I still read, and I may as well at least post lists of what I read this past year. Here's the first list.


Non-fiction


Much of the of the non-fiction I read was a bit of a hodge-podge. Cultural/political studies, feminism, history, biography. All in its way interesting and nothing I regret reading.

Helen Merrick, The Secret Feminist Cabal: A Cultural History of Science Fiction Feminisms

Cordelia Fine, Delusions of Gender

Adam Kotsko, Why We Love Sociopaths: A Guide to Late Capitalist Television
Arundahti Roy, Talking to Grasshoppers: Field Notes on Democracy
Tim Wise, Dear White America: Letter to a New Minority

Lillian Faderman, Naked in the Promised Land

Alison Weir, The Wars of the Roses
Leanda de Lisle, Tudor: The Family Story

Last Chance to See, Douglas Adams

Douglas Adams was a brilliant writer and satirist. In Last Chance to See, he recounts several expeditions he and zoologist Mark Cowardine undertook in the mid-80s as part of a BBC Radio documentary on animal species that were threatened with or nearing extinction.

They went to Madagascar, to search for the aye-aye (an endangered species of lemur); to the island of Komodo in Indonesia to look at Komodo dragons (considered a vulnerable species); to Zaire to see gorillas (threatened by poaching, habitat loss and disease) and white rhinoceroses (the Northern White Rhinocerous is critically endangered, with only 13 known living members of the sub-species as of 2007); to New Zealand to learn about Kakapo birds (critically endangered, with fewer than 100 known survivors); to China to find Yangtze River Dolphins (a species now classified as critically endandered and possibly extinct); to the island if Rodrigues in the Indian Ocean to see Rodrigues fruit bats (threatened by habitat loss).

Along the way, Adams recounts all the details of getting to the place where the animals are, dealing with local travel and bureaucratic conditions, learning about the species from local zoologists and consevationists who are tring to save these species, and his encounters with the animals themselves, with all the satire, wit and sense of the absurd that he was deservedly famous for. You laugh, until suddenly you realise that you should be crying, or raging at the threatened loss of all of these marvelous, strange, funny, beautiful creatures.

I urge you to read it, to laugh, to weep, to think.