Tell Me Why My Children Died: Rabies, Indigenous Knowledge, and Communicative Justice

Tell Me Why My Children Died: Rabies, Indigenous Knowledge, and Communicative Justice

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Product Details

ISBN-13: 9780822361244
Publisher: Duke University Press Books
Publication date: 05/27/2016
Series: Critical Global Health: Evidence, Efficacy, Ethnography Series
Pages: 344
Sales rank: 852,176
Product dimensions: 6.00(w) x 8.90(h) x 0.80(d)

About the Author


Charles L. Briggs is Alan Dundes Distinguished Professor in the Department of Anthropology, University of California, Berkeley, and the author or coauthor of ten books. 
 
Clara Mantini-Briggs, a Venezuelan public health physician, was the National Coordinator of the Dengue Fever Program in Venezuela's Ministry of Health and is a Lecturer in the Department of Anthropology at the University of California, Berkeley. They are coauthors of Stories in the Time of Cholera: Racial Profiling during a Medical Nightmare.
 

Read an Excerpt

Tell Me Why My Children Died

Rabies, Indigenous Knowledge, and Communicative Justice


By Charles L. Briggs, Clara Mantini-Briggs

Duke University Press

Copyright © 2016 Duke University Press
All rights reserved.
ISBN: 978-0-8223-6124-4



CHAPTER 1

RELIVING THE EPIDEMIC

Parents' Perspectives


For three months, all we did was cry. Another would get sick, another would get sick, and another would get sick; it was impossible. ... They were finished off, one by one.

— Alfonso Torres


My relatives, you must narrate exactly how all of this began.

— Enrique Moraleda


Mukoboina: Revisiting Ground Zero

Mukoboina, the first place hit by the mysterious epidemic, could have won an award for being the most nondescript among hundreds of other small settlements in the lower delta — until it became in July 2007 the lead story on Warao Radio, the popular designation for word-of-mouth transmission within the area. That was when the first Mukoboinian child died of a strange and terrifying new disease. Mukoboina has around eighty residents and just a dozen thatch-roofed houses perched on stilts above the mud and water of a midsized tributary of the Orinoco River. It was literally sliced out of the surrounding jungle. Relatively new, it was settled around 1990 by José Manuel Florín and Alejandrina Morales. They liked the area: there was a good beach and catfish were abundant, prompting the name, which means "the place where catfish are plentiful."

There is no store, mission, school, or nursing station, although the Institute of Nutrition did fund a small "community hearth" to provide nutritional assistance for a short while. Mukoboinans live primarily off their gardens, where they grow taro, bananas, plantains, yucca tubers, pineapples, sugar cane, and other crops (figure 1.1). Most houses have a few mango and coconut trees next to them. When fish are scarce, Mukoboinan men travel by canoe to the coast, where catches are more plentiful. Residents visit the clinic and stores in Nabasanuka and make occasional trips to Tucupita, some six hours away by motorized canoe, to sell hammocks and baskets, buy consumer goods, and petition government bureaucrats. With minor variations, Mukoboina is the delta's "everytown."

Mukoboina is a primary destination on the team's itinerary in July 2008 as it begins its investigation into the cause of the deaths. Our boat pulls up at the last house, looking for Mukoboina's local representative and wisidatu healer, Inocencio Torres. Rosaura Romero, a woman of about thirty, recognizes Tirso in the boat and, accompanied by half a dozen children, welcomes us. A boy of about four, clad only in white briefs, jumps up and down shouting, "Pollo, pollo!" "He does that every time a boat arrives with criollo [nonindigenous] passengers," Romero explains. "He thinks you're bongueros [itinerant fluvial merchants] selling chickens. He loves chicken!"

Inocencio, Rosaura's brother-in-law, emerges wearing a smile that makes you feel like you have known him for years; he climbs into the boat. Taller and thinner than most Mukoboina men, he is in his midfifties. His father was a criollo fisherman who returned to his "legitimate," nonindigenous wife in Barrancas after impregnating Inocencio's mother. Although he grew up in the delta, Inocencio spent a year as a teenager on the mainland with his father; he can understand Spanish, even though he seldom speaks it. The lines on his forehead appear to map the anxieties wrought by the way his ordinarily nondescript settlement has become a focal point of death and controversy. He is a charismatic and capable leader who listens intently when people speak. The Mukoboinans know all the team members, particularly Norbelys and Tirso, one of whose daughters-in-law hails from Mukoboina.

Accompanied by Charles, Inocencio gathers residents, stopping at each family's dock to announce, "The leaders have arrived; come and tell your story!" Except for one father, all the parents are at home; they crowd into the boat, often with several children in tow. Fearing it would capsize, the last family opts to skip from log to log over the mud to Inocencio's house, which has already begun to fill up. It is divided into two sections. The one on the right features a bench-desk combination rescued from a school modernization program, where Enrique sits surrounded by fascinated children and takes notes. Conrado settles into a plastic chair near the outside edge of the room. Some fifteen other people have already gathered. The left side of the room, where the family sleeps, contains four hammocks, shielded from the sun and rain by sheets of black plastic and temiche palms. Several parents sit nearby, cuddling their surviving children, while others listen from the dock and adjacent kitchen that jut out above the river. While taking their turn as narrator, parents stand in the middle of the room, simultaneously embraced by every eye in the house and isolated in unseen worlds of pain.

Mukoboina is regarded by all parties as the ground zero of the mysterious epidemic, the first place it tortured bodies and shattered lives. Nearly every story of the strange epidemic begins with Mukoboina, so ours does as well. In July 2008, parents seemed still to be living in mourning, terrified, and furious that other visitors had come before us but had not expressed interest in hearing their stories; they just asked questions and left without sharing their observations and hypotheses. More than anyone else, Mukoboinans had been demanding for over a year, "Tell me why my children died." Now, one parent after another rises to give testimony about the deaths of one, two, or three of their children.


WILMER TORRES AND ZOILA TORRES: THE FIRST COUPLE TO FACE THE DISEASE

We had no idea what was going on. ... His little sister developed an identical fever. It was the same sickness. — Wilmer Torres

Zoila Torres and Wilmer Torres are in their late twenties (figure 1.2). Social and outgoing, they enjoyed their trips to Tucupita, where Zoila sold the beautiful moriche palm fiber hammocks she made. They had four children. Gabriel was a bouncy eight-year-old who particularly loved to imitate the roar of an outboard motor as he played in the water, racing tiny boats around on a string. Six-year-old Graciela was a charmer whose frequent smile revealed wonderful dimples. Yuri, only two, had an oval face and the same large dark eyes as her siblings. With newly arrived Maricelia, Zoila and Wilmer could not have dreamed of a happier beginning for their family.

Wilmer comes to the middle of the room, grabbing the roof beam so firmly that his strong biceps bulge. Zoila sits silently against the wall holding Maricelia, who clings tightly. She appears prematurely aged and lost in an inner realm. Although Wilmer's face never loses its seemingly stoic quality, his head turns, his arms flutter, and his whole body seems to dance as he recounts the couple's efforts to save their children.

"Gabriel suddenly developed a fever in July 2007," Wilmer begins. The symptoms appeared on 18 July during a quick trip to Tucupita. The fever was not high, and the boy was in good spirits. As the return trip in the hot sun wore on, however, his fever climbed, and he grew weak. Once home, his parents took Gabriel to the nearby house of their uncle Inocencio, a wisidatu healer. Unfortunately, he could not locate the source of the disease, nor was he able to reduce the symptoms. It was well past midnight when the family departed. "Afterwards," Wilmer continues, "he was just the same. The illness remained." They sought out another type of specialist, a hoarotu who could look for hoa pathogens. But "it was impossible, impossible. He treated and treated him, but, just like before, nothing happened. Then heavy saliva appeared. I said, 'Let's take him to Nabasanuka, to the clinic.'" On the way, they stopped to see a third healer, but he could not locate the source of the illness either. Just as they reached Hubasuhuru, over halfway to Nabasanuka and with night falling, Gabriel died in his father's arms.

That was on 24 July 2007, the first case to appear in Mukoboina — and possibly in the delta. "We had no idea what was going on," Wilmer reported. On 8 August, "just the same way, his little sister developed an identical fever. It was the same sickness." They took two-year-old Yuri to see Uncle Inocencio, who again worked much of the night, but the results were no different. The next day, the parents visited Nurse José Pérez in Siawani, telling him, "We took her last night to the wisidatu, but she was just the same in the morning." The nurse placed her in a hammock to treat her, but his medicines failed too. Next they headed for the clinic at Nabasanuka. During the trip, "Yuri just kept getting sicker." She cried out continually and she couldn't even walk by the time they arrived. Yuri was the first case of the strange disease to reach Dr. Ricardo Cáceres's clinic. Wilmer could provide few details about the visit, except that it didn't help. The parents then took Yuri to another wisidatu but brought her back to the clinic the next day. She was terribly ill and died on 11 August before Dr. Ricardo could send her to the hospital in Tucupita. "We didn't know what had happened," Wilmer practically whispers. "We were very sad. Her mother, when she touched her little body, became very sad."

A year later, Zoila is still too numb with grief to tell her story at Inocencio's house. Moreover, it is now the same time of year the children's deaths occurred. "We're scared," Wilmer reports. "If this disease comes again, it will be really dangerous." Zoila holds Maricelia even tighter.


GRACIANO FLORÍN AND MATILSE CARRASQUERO CONFRONT THE THIRD AND FOURTH CASES

[The hospital] just gave us the boy['s body] and we came back here. — Graciano Florín

The second parent to talk about the strange disease, Graciano Florín, walks to the center of the house. Heavier-set than most Mukoboinans, he has just a hint of moustache and a face that appears unwilling to yield its childlike roundness. Like Wilmer, he grabs the beam above him for support to tell his story (figure 1.3). His wife, Matilse Carrasquero, has a serious, quiet demeanor. Comparatively well off, they live in a large home complete with exterior walls and built with commercial rather than hand-hewed lumber. In their early thirties, Graciano and Matilse had three children in July 2007: Ángel Gabriel, age eleven, Adalia, six, and Mary, who was only a few months old.

On 23 August, Ángel Gabriel was the next child to develop the strange fever. His national identity card, the parents' only image of their son, shows a boy with short black hair, deep and serious eyes, an arrow-straight nose, and slightly prominent ears (figure 1.4). Though ordinarily his parents would have just watched carefully to see if the fever got worse, the first two deaths had changed that pattern: a mild fever had become a parent's worst nightmare.

As he recounts the way the disease claimed Ángel Gabriel's body, Graciano traces its effects on his own powerful torso, creating a moving and somewhat surreal juxtaposition of bodies. The course of the disease was already familiar: fever, sore throat, headache, and body aches that were followed, on day three, by profuse salivation. Ángel Gabriel asked for food, but he grew frightened and rejected it when it was offered, just as with water. The parents consulted Inocencio, as both wisidatu and local leader, who again tried to treat this disease. He urged them to visit Nurse José Pérez, and they rushed Ángel Gabriel to Siawani. Again the nurse used his medicines, but the fever did not diminish. Nurse José took the child and parents in his little boat to Nabasanuka, and Dr. Ricardo quickly referred Ángel Gabriel to Tucupita.

Graciano and Matilse knew very well what had happened when Wilmer and Zoila refused to let Dr. Ricardo send Yuri to Tucupita, taking her first to a wisidatu. They accordingly accepted the physician's recommendation immediately. "Early the next day we took him to Tucupita." Alerted to Ángel Gabriel's imminent arrival, an ambulance met the family at the port at Volcán, made the twenty-minute journey to Tucupita, and continued to the Maternal-Pediatric Dr. Oswaldo Ismael Brito wing of the Tucupita Hospital. After spending a day and night there, doctors sent Ángel Gabriel to Maturín, the capital of neighboring Monagas State. Maturín boasts more sophisticated medical centers, but expertise and technology did not help Ángel Gabriel. He died there on 31 August, a week after he developed a fever. Graciano recalled that medical personnel only told them, "Your son is dead." Regarding what killed Ángel Gabriel, his father said, "I don't know. They didn't tell us. I have no idea." The couple did exactly what physicians ask of delta parents — they recognized the seriousness of their son's condition, went to the local nursing station and then the clinic for help, and trusted his life to nurses and doctors. When Ángel Gabriel died, "They just gave us the boy and we came back here."

Arriving in Mukoboina with Ángel Gabriel's remains, Graciano and Matilse learned that their daughter Adalia, who had been in her grandmother's care, had come down with "the same fever." Despite their misgivings about the care Ángel Gabriel received, on 5 September they took six-year-old Adalia to Nabasanuka, where Dr. Ricardo hospitalized her and administered antibiotics. When she failed to improve, Dr. Ricardo proposed sending her to Tucupita, but after their recent experience, her parents refused. They trusted the kind young physician in Nabasanuka and the bilingual nurses, but their experience with hospitals in the city gave them the shudders. Graciano doesn't say it in front of everyone at this meeting, which includes a doctor and a nurse, but they had come to share a growing sentiment that, in view of intubation and other procedures — particularly given the lack of any effort to explain them to the parents — hospital personnel were torturing their children.

Several healers attempted, unsuccessfully, to treat Adalia before the parents accepted Dr. Ricardo's recommendation the following morning. Adalia was rushed by fluvial ambulance to the Luis Razetti Hospital in Tucupita, and the next day she followed in Ángel Gabriel's footsteps to Dr. Manuel Núñez Tovar Hospital in Maturín. She died the next day. Graciano speaks only briefly about Adalia's death; losing a second child just seems to be too much for him.


SANTA MORALES AND ALFONSO TORRES: PARENTS OF THE FIFTH PATIENT

My daughter said to me before leaving for Tucupita [Hospital], "Mama, I'm dying. I'm leaving you. I'm dying. I'm dying." — Santa Morales

The only mother to speak at this assembly, Santa Morales has small, deep-set eyes that are surrounded by circles of fatigue. She is fifty years old, and ten of her eleven children (ages five to twenty-nine) are alive (figure 1.5). Her husband, Alfonso Torres, fifty-nine, a local leader, is away. Santa smiles warmly as Conrado gets up and offers her the plastic chair he had been using. At first her voice waivers, seeding doubts about her ability to press on. She ties a palm fiber string into knots as she speaks about the disease that took her second youngest child, six-year-old Yanilka, as if she is trying to keep herself anchored in the here and now rather than slip into a world of pain. She musters a force that transfixes her audience.

Yanilka was a happy and charming child who loved to play with her sisters and nephews, nieces, and cousins. That night Yanilka told Santa, " 'Mom, I'm not going to eat. It hurts.' The fever started then and lasted for three days." Three Mukoboinan children had already died, and Adalia was ill. When healers had failed to save them, a collective decision had been made to take them to the Nabasanuka clinic. Why did Yanilka's family wait for three days before seeking treatment? Yanilka came to her parents late in life and was muy consentida (meaning both "spoiled" and "treasured"). She brought out her father's tender side, and he was deeply attached to her. A serious man and deep thinker who reflects on issues carefully before speaking, Alfonso had a different strategy to save her life (figure 1.6). The delay was caused by the time it took him to secure loans from relatives and friends and hire a boat; these preparations in place, he left Mukoboina before dawn with Yanilka in his lap, wrapped in a blanket to protect her first from the chilly dawn and later from the sun's rays. Alfonso bypassed Nabasanuka and took Yanilka directly to the Tucupita Hospital; he wanted to stack the deck. He wanted Yanilka's case to turn out differently.


(Continues...)

Excerpted from Tell Me Why My Children Died by Charles L. Briggs, Clara Mantini-Briggs. Copyright © 2016 Duke University Press. Excerpted by permission of Duke University Press.
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Table of Contents


Illustrations  ix

Prologue  xiii

Preface  xvii

Introduction  1

Part I.

1. Reliving the Epidemic: Parents' Perspectives  29

2. When Caregivers Fail: Doctors, Nurses, and Healers Facing an Intractable Disease  76

3. Explaining the Inexplicable in Mukoboina: Epidemiologists, Documents, and the Dialogue That Failed  109

4. Heroes, Bureaucrats, and Millenarian Wisdom: Journalists Cover an Epidemic Conflict  127

Part II.

5. Narratives, Communicative Monopolies, and Acute Health Inequities  159

6. Knowledge Production and Circulation  179

7. Laments, Psychoanalysis, and the Work of Mourning  205

8. Biomediatization: Health/Communicative Inequities and Health News  225

9. Toward Health/Communicative Equities and Justice  245

Conclusion  260

Acknowledgments  275

Notes  279

References  287

Index  303

What People are Saying About This

Jaime Breilh

"A shocking testimony of a reality that challenges us. Again Charles L. Briggs and Clara Mantini-Briggs give us irrefutable evidence of the greatest contradiction of the market society: the opulence of a few and misery for the many. Their account of the distressing but institutionally invisible reproduction of an avoidable epidemic confirms the revealing power of critical ethnography and places on the table of public health the role that communication plays in the social determination of health."
 

Vita: Life in a Zone of Social Abandonment - João Biehl


"Tell Me Why My Children Died is a product of intrepid inquiry, original analytical work, and, above all, deep respect and care for the most vulnerable in the Lower Delta. This book is a pathbreaking contribution to the anthropology of expert knowledge and health inequality, and a powerfully crafted field guide for a global health humanities."
 

Vita: Life in a Zone of Social Abandonment - João Biehl

"Tell Me Why My Children Died is a product of intrepid inquiry, original analytical work, and, above all, deep respect and care for the most vulnerable in the Lower Delta. This book is a pathbreaking contribution to the anthropology of expert knowledge and health inequality, and a powerfully crafted field guide for a global health humanities."
 

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