Stigma, deforming metaphors and patients' moral experience of multibacillary leprosy in Sobral, Ceará State, Brazil.

In response to the call for a new Science of Stigma, this anthropological study investigates the moral experience of patients diagnosed with severe multibacillary leprosy. From 2003 to 2006, fieldwork was conducted in the so-called 'United-States-of-Sobral', in Ceará State, Northeast Brazil. Sobral is highly endemic for leprosy, despite intensified eradication efforts and a 30% increase in primary care coverage since 1999. Of 329 active leprosy cases at two public clinics, 279 multibacillary patients were identified and six information-rich cases selected for in-depth ethnographic analysis, utilizing illness narratives, key-informant interviews, home visits, participant-observation of clinical consultations and semi-structured interviews with physicians. A 'contextualized semantic interpretation' revealed four leprosy metaphors: a repulsive rat's disease, a racist skin rash, a biblical curse and lethal leukemia. Far from value-free pathology, the disease is imbued with moral significance. Patients' multivocalic illness constructions contest physicians' disease discourse. 'Skin Spot Day' discriminates more than educates. Patients' 'non-compliance' with effective multi-drug therapy is due to demoralizing stigma more than a rejection of care. 'Social leprosy' in Northeast Brazil deforms patients' moral reputations and personal dignity.

Stigma, deforming metaphors and patients' moral experience of multibacillary leprosy in Sobral, Ceará State, Brazil / Estigma, metáforas deformadoras e experiência moral de pacientes com hanseníase multibacilar em Sobral, Ceará, Brasil

In response to the call for a new Science of Stigma, this anthropological study investigates the moral experience of patients diagnosed with severe multibacillary leprosy. From 2003 to 2006, fieldwork was conducted in the so-called "United-States-of-Sobral", in Ceará State, Northeast Brazil. Sobral is highly endemic for leprosy, despite intensified eradication efforts and a 30 percent increase in primary care coverage since 1999. Of 329 active leprosy cases at two public clinics, 279 multibacillary patients were identified and six information-rich cases selected for in-depth ethnographic analysis, utilizing illness narratives, key-informant interviews, home visits, participant-observation of clinical consultations and semi-structured interviews with physicians. A "contextualized semantic interpretation" revealed four leprosy metaphors: a repulsive rat's disease, a racist skin rash, a biblical curse and lethal leukemia. Far from value-free pathology, the disease is imbued with moral significance. Patients' multivocalic illness constructions contest physicians' disease discourse. "Skin Spot Day" discriminates more than educates. Patients' "non-compliance" with effective multi-drug therapy is due to demoralizing stigma more than a rejection of care. "Social leprosy" in Northeast Brazil deforms patients' moral reputations and personal dignity.

No intuito de criar uma Ciência do Estigma, este estudo antropológico investiga a experiência moral de pacientes diagnosticados com a hanseníase multibacilar. De 2003 a 2006, a pesquisa foi conduzida nos "Estados Unidos do Sobral", Estado do Ceará, Brasil, altamente endêmico para hanseníase apesar da intensificação de erradicação e o aumento de 30 por cento na cobertura de saúde desde 1999. Entre 329 casos de hanseníase, 279 foram identificados como multibacilar e seis casos "ricos em informação" foram selecionados para aprofundamento. Narrativas da enfermidade, entrevistas etnográficas, visitas domiciliares, observação-participante de consultas clínicas e entrevistas semi-estruturadas com médicos foram realizadas. A "interpretação semântica contextualizada" revelou quatro metáforas de "lepra" - uma repulsiva doença de rato, uma infecção de pele com conotações racistas, uma praga bíblica, e uma leucemia letal. Essas metáforas "multivocálicas" contestam o discurso biomédico. A lepra é repleta de significados morais. O "Dia da Mancha" descrimina mais do que educa. A falta de aderência à eficaz poliquimoterapia é causada mais pelo estigma desmoralizante do que pela rejeição ao tratamento em si. A "lepra social" no nordeste brasileiro deforma a reputação moral e a dignidade do paciente.

Beggars, metaphors, and stigma: a missing link in the social history of leprosy.

Students of leprosy stigma are at odds over its sources, intensity, and current presistence. On the basis of a study of leprosy in Thailand that combined an archival survey with anthropological field-work, the present article offers a different thesis on these issues from those that have been proposed thus far. The thesis suggests that prior to the discovery of a cure for the disease, its sufferers encountered ambivalent rather than severly stigmatizing reactions. Yet the public's selective exposure-mainly to beggars with the disease-paved the way to the perception of leprosy as the epitome of stigmatization and to its transformation into a metaphor for degradation. Progress in the medical treatment of the disease significantly improved patients' social acceptance but also allowed them to keep their illness a secret. Their consequent disappearance from the public eye turned the figurative use of leprosy in the spoken language into the main source of shaping its image. This development contributed to the irrefutability and perpetuation of the negative image, and even to its intensification to the extent of utter divorce from concrete reality. After expounding this thesis, the paper discusses its potential contribution to resolving the disputes over the roots, severity, and persistence of leprosy stigma on the international level.