Duke University Press Log

Priscilla Wald on the Outbreak Narrative

The news that the first case of ebola in the United States has been diagnosed has the media in a frenzy and some people in Dallas panicking: taking their children out of school, calling for border closures and general quarantines. Priscilla Wald, Professor of English and Women's Studies at Duke University, is not surprised by the reaction, which follows a narrative very similar to past epidemics, and she counsels in this Canada.com story that it is important to try to quell people's fears. In light of the epidemic, and the predictable reactions to it, we offer an excerpt from Wald's 2008 book Contagious: Cultures, Carriers, and the Outbreak Narrative in which she explains her concept of "the outbreak narrative."

 

Contagion is more than an epidemiological fact. It is also a foundational concept in the study of religion and of society, with a long history of explaining how beliefs circulate in social interactions. The concept of contagion evolved throughout the twentieth century through the commingling of theories about microbes and attitudes about social change. Communicable disease compels attention—for scientists and the lay public alike—not only because of the devastation it can cause but also because the circulation of microbes materializes the transmission of ideas. The interactions that make us sick also constitute us as a community. Disease emergence dramatizes the dilemma that inspires the most basic human narratives: the necessity and danger of human contact.

The outbreak narrative—in its scientific, journalistic, and fictional incarnations—follows a formulaic plot that begins with the identification of an emerging infection, includes discussion of the global networks throughout which it travels, and chronicles the epidemiological work that ends with its containment. As epidemiologists trace the routes of the microbes, they catalog the spaces and interactions of global modernity. Microbes, spaces, and interactions blend together as they animate the landscape and motivate the plot of the outbreak narrative: a contradictory but compelling story of the perils of human interdependence and the triumph of human connection and cooperation, scientific authority and the evolutionary advantages of the microbe, ecological balance and impending disaster.

The conventions of the paradigmatic story about newly emerging infections have evolved out of earlier accounts of epidemiological efforts to address widespread threats of communicable disease. While I use "the outbreak narrative" to refer to that paradigmatic story, which followed the identification of HIV, I use "outbreak narratives" broadly to designate those epidemiological stories. I return to the early years of bacteriology and public health in the United States to trace the impact of the discovery of the microbe on attitudes toward social interactions and collective identity that characterize the outbreak narrative of disease emergence.

Outbreak narratives and the outbreak narrative have consequences. As they disseminate information, they affect survival rates and contagion routes. They promote or mitigate the stigmatizing of individuals, groups, populations, locales (regional and global), behaviors, and lifestyles, and they change economies. They also influence how both scientists and the lay public understand the nature and consequences of infection, how they imagine the threat, and why they react so fearfully to some disease outbreaks and not others at least as dangerous and pressing. It is therefore important to understand the appeal and persistence of the outbreak narrative and to consider how it shapes accounts of disease emergence across genres and media.

Read the entire introduction here. 

Copyright Duke University Press, 2008.

Rafael Campo on PBS News Hour

Poet and doctor Rafael Campo, whose latest book is Alternative Medicine, appeared on the PBS News Hour this week to discuss the power of poetry in healing and teaching. Watch the video below and then head to the News Hour website for videos of Campo reading three of his poems and for a lesson plan for using Campo's poetry with your own students.

 

Scholars Question Olympic Sex Testing

Scholars Katrina Karkazis, author of Fixing Sex, and Rebecca Jordan-Young assert that new sex testing of female Olympic athletes is unfair and scientifically baseless. In a paper published last week in the American Journal of Bioethics, Karkazis and Jordan-Young say the policy could "create gender witch hunts." The International Olympic Committee initiated the new tests for testosterone levels in women in the wake of South African runner Caster Semenya’s gotional Olympic Committee initiated tld-medal performance in the 800 metres at the 2009 world championships. But Karkazis and Jordan-Young think the tests feed into larger problems with gender identity in sport. Writing in today's New York Times, they argue that, " Policing women’s testosterone would exacerbate one of the ugliest tendencies in women’s sports today: the name-calling and the insinuations that an athlete is “too masculine,” or worse, that she is a man." In a piece in Anthropology News, they write that high testosterone levels do not guarantee a woman will outperform her peers; rather they assure she will "look masculine," and thus cause suspicion about her sex. They conclude that "the idea that the presence of women with hyperandrogenism is athletically rather than culturally threatening to other women athletes doesn’t hold up. In the process, what we get is extraordinary scrutiny of women who fail to conform to gender norms, which is hardly a step toward fairness for female athletes." To hear more about the research, listen to a podcast with Katrina Karkazis and check out her book for a thorough discussion of the medical and social issues surrounding children born intersex.

40th Anniversary of Our Bodies, Ourselves

This year marks the 40th anniversary of the publication of the first edition of the landmark book Our Bodies, Ourselves by the Boston Women's Health Collective. In celebration, they are hosting a symposium on Saturday, October 1 and launching the ninth edition of the iconic text. USA Today's Anita Manning says the book "not only challenged the medical establishment and its assumptions about women, it also encouraged women to explore their own bodies and provided, in unexpurgated terms, information about sexuality and reproduction that went far beyond the birds and bees." Kathy Davis, senior researcher at the Institute of History and Culture at Utrecht University in the Netherlands, calls attention to the global reach of Our Bodies, Ourselves in her book The Making of Our Bodies, Ourselves: How Feminism Travels across Borders. Our Bodies, Ourselves has a global reach, with more than 30 foreign language editions in circulation. But the American edition was not simply translated, Davis explains. Rather, careful consideration by local groups was given to adapting the book to each culture while retaining the empowering feminist message. Davis will be attending the symposium and moderating a panel about Our Bodies, Ourselves's global partners. Check out the symposium if you're in Boston, and read the book to learn more about this important global feminist project.

Barbara Gordon Discusses Recurrent and Late-Stage Breast Cancer

Check out our latest author interview video! Barbara L. Gordon, one of the authors of Breast Cancer Recurrence and Advanced Disease: Comprehensive Expert Guidance (2010), discusses why she was inspired to write a book on late-stage cancer and offers helpful advice to others facing this situation.

 

This comprehensive guide gathers in one place authoritative medical information about recurrent and late-stage breast cancer, and it addresses the practical, emotional, and interpersonal aspects of death and dying.

Victims of Forced Sterilization Tell Their Stories

From the 1920s through the 1970s, the North Carolina Board of Eugenics oversaw the forced sterilization of nearly 7600 people. Men and women were declared "feeble-minded" or "promiscuous" and many were sterilized without even their knowledge, let alone their consent. Governor Mike Easley issued an official state apology for the sterilizations in 2002, but no compensation has been paid to the victims. Now, decades after the program ended, a task force has been established to hear the victims stories and consider paying restitution.

In her book Private Bodies, Public Texts: Race, Gender, and  Cultural Bioethics, Karla FC Holloway asserts that women of color were particularly vulnerable to forced sterilization efforts. She cites the startling statistic that an "experiment in population control" led to "more thatn one-third of the women of childbearing age in Puerto Rico" being sterilized in the 1950s. And her research cites case after sad case of black, Native American, and poor women being sterilized against their will. Her book calls for medical and research professionals to realize the link between culture and ethics, and to understand that their work is always influenced by the culture at large.

Many North Carolina lawmakers have voiced concern about the cost of possible reparations. Representative Larry Womble has been an outspoken advocate for the victims. He says, "The right thing is the government be responsible for what they did, the government have to pay for what they did." But Karla Holloway is worried that being allowed to "tell their stories" in a public forum is all the victims may get. "Spectacle is substituting for rights and reparations," she says, "and at what cost?"

A Few Odds and Ends

Our forays around the Internet today reminded us of several of our books, so here is a grab bag of links.

Bust has a short piece on a form of male birth control being developed in India. It's called RISUG—an acronym for "Reversible Inhibition of Sperm Under Guidance." So far no American or European drug company has developed a male contraceptive. In her book The Male Pill: A Biography of a Technology in the Making, Nelly Oudshoorn explains why. She says it ultimately comes down to how we define masculinity.

Buzz Feed has a list of 9 Suprising Things You Probably Didn't Know About Edgar Rice Burroughs. Burrough's Tarzan series is well-known, but did you know Burroughs has a crater named after him on Mars? A few years ago we were pleased to publish a collection of letters between Burroughs and Herbert T. Weston, a Nebraska businessman, called Brother Men. These letters between the famous author and a friend he had known since military school give a glimpse into Burrough's personal life, and insight into visual culture and media technologies, consumerism, the history of the family, the history of authorship and readership, and the development of the West.

The New Yorker considers the meaning of the U.S. Open without Tiger Woods. Lee Ellis notes that the last time the Open was held at Congressional Country Club was 1997. Tiger had just one his first major. Since then, there's been a dramatic change in the amount of money at stake in golf, which Ellis says is Tiger's legacy. In February, we'll be publishing anthropologist Orrin Starn's take on Tiger, The Passion of Tiger Woods: An Anthropologist Reports on Golf, Race, and Celebrity Scandal. Starn tackles the complex intersection between money, sex, and race in the Tiger scandal. In the end Starn thinks Tiger will make a comeback. "You can’t have good drama without failure, mistakes, and some surprising plot twists," he writes. "As banal as they might have been, Tiger's personal troubles had given an unexpected turn to his story, a whole new layer of speculation, doubt, and debate." We're wondering now whether Tiger will have returned to golf by the time Starn's book comes out next winter. Check back for more on this fascinating forthcoming title.

 

 

Living with Metastatic Breast Cancer

Today's New York Times features a story about women living with metastatic breast cancer, cancer that has returned and spread to other parts of the body. Reporter Roni Caryn Rabin writes that many of these women find that their story does not fit the narrative put forth by many advocacy groups: that women can fight their cancer, cure it, and become "survivors." Rabin quotes Dr. Suzanne Hebert describing how she felt when attending a support group full of recently-diagnosed women: "It was a horrible moment. I had nothing in common with them. I was what scared them." Elon University professor Barbara Gordon, author of Breast Cancer Recurrence and Advanced Disease: Comprehensive Expert Guidance, felt similarly alienated: "When I was thought to have metastatic breast cancer, I could not find the information I needed. I felt somewhat like Dr. Herbert did, that I was facing a different world than those with earlier stages of the disease." Gordon was lead to write her book, which is now available for women facing metastatic breast cancer. It gathers in one place authoritative medical information about recurrent and late-stage breast cancer, and it addresses the practical, emotional, and interpersonal aspects of death and dying. Gordon says, "Even though women with metastatic breast cancer can benefit from medical knowledge to enable them to make treatment decisions and though they have a variety of related concerns that need to be addressed in facing advanced disease, there is far less information available to them than for those with earlier stages of the disease." We hope the publication of her book will help to change that.

World AIDS Day

Today is World AIDS Day, founded by the United Nations in 2004 as a way to raise awareness about the global disease, commemorate those who have died from it, and celebrate new medial advances. Although we still have a long way to go before curing the deadly disease, many sufferers around the world, even in poor nations, now take medication allowing them to live relatively normal lives. But when antiretroviral drugs were first discovered in the 1990s, treatment was mostly reserved for wealthy Westerners. Vinh-Kim Nguyen's new book The Republic of Therapy: Triage and Sovereignty in West Africa’s Time of AIDS argues that during the years when antiretroviral medicines were scarce in Africa, triage decisions were made determining who would receive lifesaving treatment. Nguyen explains how those decisions altered social relations in West Africa. In 1994, anxious to "break the silence" and "put a face to the epidemic," international agencies unwittingly created a market in which stories about being HIV positive could be bartered for access to limited medical resources. Being able to talk about oneself became a matter of life or death. Nguyen's book is an important cautionary tale for those continuing to work on HIV in Africa. If you're in the New York area, you can hear him talk about his book and pick up a copy for yourself. He'll be speaking at the New York Academy of Medicine tomorrow, December 2, at 5:30 p.m.

Presidential Commission to Study Human Subjects Protection

Last week President Obama issued a memo calling for calling for the Presidential Commission for the Study of Bioethical Issues to "conduct, beginning in January 2011, a thorough review of human subjects protection to determine if Federal regulations and international standards adequately guard the health and well-being of participants in scientific studies supported by the Federal Government." The call was prompted by revelations earlier this fall that the U.S. Public Health Service conducted STD research on unsuspecting Guatemalans in the 1940s. But, as work by Duke authors attests, that was not an isolated incident.

In his recent book The Professional Guinea Pig, Roberto Abadie details how the pharmaceutical research industry uses human test subjects in sometimes ethically suspect ways. Abadie sees the commission as a positive development. He says, "The Presidential commission on ethics is an important step in understanding the role of the US government in this scandal but also in devising ways to protect current research subjects domestically and also abroad where most research will be conducted in the following years. It is important that the commission moves beyond abstract ethical principles and invocations and towards effective policy recommendations that recognize the changing landscape of human research protection. One important deficit the commission should address, for example, is the lack of a registry of research subjects' participation in clinical trials research covering all phases in clinical trials research both domestically and internationally. Without this instrument we are not able to tell how many trials a research subject has volunteered for, or if he or she is doing more than one trial at the same time, compromising thus, not only their well being but also the validity of the whole trial."

Karla FC Holloway is also working on issues of ethics in medical research. Her book Private Bodies, Public Texts will be out next March. She is also hopeful about the commission, saying  "It's both appropriate and just that the president will convene a particular panel for this discussion. Bioethicists have identified certain subjects as 'vulnerable' for scores of years. But we have been less willing to acknowledge  that that vulnerability is directly tied to social judgments about the quality of personhood, the value of certain lives, and the competition of scientific and research objectives—especially when it is centered on bodies that have less social capital. It's important to tie vulnerability to its source in order to make sure we don't allow our stereotypes to follow us into clinical research paradigms."