Una Enfermedad Monstruo

In 2007, several Warao children in the Venezuelan jungle unexpectedly died in a terrifying fashion. Those who fell ill appeared to be healthy, but hours before dying they became listless, burned with fever, and started convulsing; some of the conscious or semiconscious screamed that monsters were taking them away. Ultimately they all died. Soon adults started to die as well. This book is part medical mystery (what was causing these horrible deaths?) and part condemnation of a health-care system that permits the death of the indigenous poor without medical or societal accountability. Varied voices (academics, indigenous healers, physicians, and local people) seamlessly come together to create a powerful narrative that illustrates how those living in the fringes of society struggle for visibility, especially in times of medical emergency.This newest collaboration of the well-known and respected team of medical anthropologist Charles Briggs and physician Clara Mantini-Briggs is a gripping book that breaks with conventional anthropological narratives of the outbreak of an epidemic. Their previous collaborative book, Stories in the Time of Cholera: Racial Profiling during a Medical Nightmare (2003), examined the aftermath of a cholera outbreak in Venezuela and the breakdown of the health system when nearly 500 Warao died. While some themes—racial exclusion, racial violence, poverty in the delta, lack of basic health care—are similar, there are also key differences in this book. First, four Warao members of the health team are coauthors. This distinction is crucial, for these are not mere informants but respected healers in their communities and eyewitnesses who give the reader an unprecedented interpretation of the events. Second, this collaboration between authors was not previously planned. In fact, Briggs, Mantini-Briggs, and nurse Norbelys Gómez arrived in the delta as part of a separate collaborative health project, and it was only upon their arrival that they began to hear about strange deaths in several villages and the many possible origins of the affliction.It is important to note that Briggs, who speaks Warao and often acted as interpreter for the group, was also for some time an apprentice to a Warao healer. Mantini-Briggs is a licensed physician, Norbelys Gómez (a native of the delta) is a nurse, and the Warao men are both respected healers in the community. In other words, this was an unusually well-equipped team of individuals with a sophisticated understanding of the region, the people, the culture, local diseases, and the existing health-care systems who crucially were capable of producing a medical profile of the 30 villages that they visited while deaths continued to happen around them. The ability to create a clinical profile proved vital because most visiting doctors did not stay for more than a year in the region, and their diagnoses were often tinged with stereotypes of the Warao as dirty, ignorant, and unclean.As they made their way deeper into the delta, illness was everywhere. To place the health conditions of the Warao in context, nearly 26 percent of Warao children never reach the age of five. The life span of an adult is often four decades below that of a nonindigenous person. Death is a part of daily life, yet it is only when the mother of a young victim mentions that all the chickens have also died in the community and Mantini-Briggs witnesses a case of hydrophobia (fear of water) that she is able to speculate correctly that the sickness is rabies caused by bat bites. Answer in hand, the authors' story then becomes a narrative in frustration as the six team members struggle to get local, then national, and eventually international aid and recognition of the problem. It appears that for most health officials the Warao are a disposable people, and little to no effort is made to save them. Most of the team members are threatened and harassed by political and legal authorities, and some must flee fearing for their safety.The short book is written in an almost conversational first-person tone and takes on the tenor, especially when the Warao speak, of an urgent testimonial. At the same time, it is an oral history account of the initial confusion, fear, and disorientation that accompanies an unknown medical crisis. Every so often you read a book that grips you and doesn't let you go; Una enfermedad monstruo stayed with me well after I set it down. Part of it is the actual story, but it is also the directness with which the Warao speak of the pain of social abandonment. As an example, Conrado Moraleda Izco explains the first days in a community thus: “In the community of Mukoboina it seemed that all the children were going to run out. Death was everywhere and the community was sick with sorrow” (p. 34). Because the Warao are often portrayed as not being perturbed by the death of loved ones (because it happens so often), documenting, in words and in pictures, the grief of the community is another crucially important contribution of this book. Showing how parents desperately row up to eight hours in their small boats to try to save their loved ones and the anguish visible in the photos taken by the team humanize a people whom the local establishment continue to dehumanize. This is a powerful historical account of a health tragedy written as a page-turning drama. The effective and compelling multiperson narrative of writing the history of a disease and the confrontation with state political and medical officials make this book a must-read

Art · Criminology · Ethnology · Health care · Indigenous · Jungle · Literature · Mythology · Narrative · Nightmare · Political science · Poverty · Psychiatry · Sociology · Classics · History · Indigenous Health and Education · Law · Medicine · Public Health and Social Inequalities · Venezuelan Migration and Society