Stigma Continuity of Leprosy in Brazil, 1924-2018 Restricted; Files Only

Llovet, Alexandra (Spring 2019)

Permanent URL: https://etd.library.emory.edu/concern/etds/8c97kr39m?locale=en
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Abstract

Leprosy exemplifies the social, physical, and mental repercussions that disease can have for patients. Brazil and India have the most newly diagnosed cases of leprosy per year. From the 1920s to the 1970s, Brazil’s health policies required that patients be placed in leprosaria distant from their loved ones and isolated. These policies traumatized and dehumanized patients. I use an interdisciplinary approach to analyze the continuity of discrimination and stereotyping of leprosy in Brazil. This project aims to spread awareness that leprosy is still a problem to be addressed and develop an understanding of the power and longevity of disease stigma and stereotypes. Over two summers in Brazil, I compiled four types of sources from 1924 to 2018: (1) literary sources, (2) visual sources, (3) medical records, and (4) oral narratives. Using literary analysis of themes and representations, I analyze visual and literary sources of Leprosy in Brazil. I gathered ten oral narratives of healthcare workers and patients through snowball sampling in two leprosaria, a state reference hospital, and local clinics. I used medical records (1920s-1980s) from the Emilio Ribas Public Health Museum’s archives in São Paulo that show a narrative of the patient’s lives in the leprosaria, detailing runaways, removed children, etc. and clinical treatment. The pool of sources helps understand life when labelled a “leper” in Brazil. Through the diversity of sources across time and intended fields (literature, art, public health), I show the continuity of stigma and fear despite leprosy’s curability since 1941. I analyze the diverse origins of the stigma of leprosy and suggest that the cultural phenomena surrounding leprosy has a longstanding impact on patient’s quality of life. Leprosy in Brazil shows the failure of purely biomedical medicine in treating patients. Lack of empathy and consideration for patients’ quality of life has longstanding effects that persist even after a biological cure is discovered. Public health campaigns should target the many origins of leprosy stigma to help fully mitigate patient discrimination.

Table of Contents

Introduction ……………………………………………………………………………………..1

           Methodology…………………………………………………………………………….2

           Outline……………………………………………………………………………………6

Chapter I: Leprosy, Stigma, and Legislation…………………………………………………….9

           What is Leprosy? ……………………………………………………….……………….9

           Stigma and Disease……………………………………………………………...……….15

           Leprosy Legislation in Brazil…………………………………………………………….17

           Conclusions………………………………………………………………………………20

Chapter II: Isolation (1923-1976) Fortified the Stigma of Leprosy……………………………..22

           Leprosy Stereotype for a Political Agenda: Broco’s Engraving……………………...….23

                       Social hierarchy and disease…………………………………………….……….24

                       Final thoughts on leprosy stereotype for a political agenda……………………..27

           Stigma Has Diverse Origins: Gonçalves’s Poetic Examples……………...……………..27

                       Disfiguration and Religion……………………………………………………….29

                       Self-stigmatization……………………………………………………………….30

                       Solitude and family………………………………………………………………31

                       Final thoughts on Gonçalves……………………………………………………..35

           Government Control of Human Bodies: Prophylaxis Poster and Julia’s Medical Record.35

                       Keeping patients distant: the DPL’s poster……………………………………..36

                       Powerless patients: Julia’s medical record……………………………………...37

                       Final thoughts on government control…………………………………………..39

           Stigma Overcomes Family: Maria’s Oral Narrative…………………………………….39

                       Leprosy as an inherent trait………………………………………………………40

                       Leprosy as an extrinsic trait…………………………………………………...…41

                       Final thoughts on stigma overcoming family……………………………………42

           Prioritizing Empathy Instead of Stigma: Guimarães’s Short Stories……………………42

                       Grouping stigmatized diseases: leprosy and mental illness……………………..43

                       Patient innocence………………………………………………………………..45

                       Final thoughts on prioritizing empathy………………………………………….45

           Conclusions………………………………………………………………………………46

Chapter III: Post-Isolation (1976-2018) Trauma and the Burden of Hiding Leprosy…………...48

           Intergenerational Effects of Isolation and Stigma: Children of Leprosy’s Narratives…..50

                       Physical abuse and disability…………………………………………………….52

                       Psychological abuse and irreparable trauma……………………………………..53

                       Inescapable poverty………………………………………...……………………55

                       Final thoughts on intergenerational effects…………………………………..….55

           Biblical Stigma After 1976: Veganin’s Painting and the Pope’s Misuse of “Leprosy”…56

                       Veganin’s painting………………………………………………………………57

                                   Condemnation: allusions to biblical and ancient leprosy………………..58

                                   Depictions of patients and healthcare providers…………………………59

                                   Final thoughts on Veganin’s painting………………...………………….60

                       The Pope’s speeches……………………………………………………………..60

Final thoughts on biblical stigma………………………………………………..62

           Hiding Unpleasant Symptoms: Clara and Fernanda’s Narratives……………………….63

                      Observing Hospital Procedures………………………………………………….63

                                   Check-in………………………………………………………………….64

                                   Physical therapist and disability………………………………………….65

                                   The physician’s role……………………………………………………...66

                                   Contact cases……………………………………………………………..66

Symptoms lead to isolation: Clara’s narrative…………………………………...68

                       Preventable disability and Stigma: Fernanda’s narrative………………………...69

                       Final thoughts on hiding symptoms………………………………...……………71

           Battling Widespread Misinformation: Guilherme, Tiago, and Ana’s Narratives………..71

                       Misinformation among professionals……………………………………………72

                       Misinformation in families………………………………………………………73

                      Final thoughts on misinformation………………………………………………..73

           Poverty Begets Poverty: Diogo and Pedro’s Narrative…………………………………..74

                       Loss and self-defense: Diogo’s narrative………………………………………..74

                       Patients in hiding: Pedro’s narrative……………………………………………..77

                       Final thoughts on poverty begets poverty……………………..…………………78

           Conclusions……………………………………………...……………………………….78

Conclusions………………………………………………………………………………………81

           Recommendations………………………………………………………………………..85

           Future Directions……………………………………………………………...…………88

Appendix A………………………………………………………………………………………92

Appendix B………………………………………………………………………………………93

Appendix C………………………………………………………………………………………94

Appendix D………………………………………………………………………………………95

Appendix E………………………………………………………………………………………96

Appendix F………………………………………………………………………………………97

Appendix G………………………………………………………………………………………98

Appendix H………………………………………………………………………………………99

Appendix I………………………………………………………………………………………100

Appendix J……………………………………………………………………………………...101

Appendix K……………………………………………………………………………………..102

Appendix L……………………………………………………………………………………..103

Appendix M…..………………………………………………………………………………..104

Appendix N……………………………………………………………………………………..105

Appendix O……………………………………………………………………………………..106

Bibliography…………………………………………………………………………………....108

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