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

Abstract

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.

Leprosy in the 21st Century

“…While not physically serious or permanent, the side effects of clofazimine (which include darkening of the skin and dry skin/scaliness of the skin [ichthyosis]) can have social and emotional consequences for patients. Changes in skin tone from clofazimine can alert others to the fact that patients are being treated for HD (in areas where this side effect is recognized or known), alert others to a general problem that patients are having (which can also generate stigma), affect patients' self-perception or self-esteem, and/or, in some cases, change a person's racial category (as reported for patients in the United States and Brazil, for example), which can have consequences in terms of how these patients are treated by others and could potentially affect employment status and social relationships, among other things (54,55).…”

"Carne crua e torrada": a experiência do sofrimento de ser queimada em mulheres nordestinas, Brasil

“…Afirmamos que o estigma e a vergonha associados às sequelas das queimaduras são socioculturalmente construídos. O olhar julgador do outro é o que torna a cicatriz da epiderme uma "desgraça" -uma marca "MA" de Marcos -deixada maculada no corpo 11,12,15 . Assim, a cicatriz absorve um juízo de valor moral.…”

“…Assim, a cicatriz absorve um juízo de valor moral. Kleinman 12 afirma que é melhor compreender o estigma como experiência moral 11,12 , configurado dentro de um mundo local e particular -como, no nosso caso, numa unidade de queimados.…”

“…As vítimas são rotuladas como "não pessoas" 10 , sofrem caladas (entre quatro paredes) sem o frenesi midiático. Ainda, no Ceará, seres humanos aniquilados socialmente por doenças infecciosas carregam marcas e cicatrizes da iniquidade socioeconômica, a realidade injusta, inscrita no corpo, silenciada e pouco estudada nos aspectos subjetivos 11 . Fora das estatísticas nacionais e longe dos noticiários, a queimadura simboliza o estigma humano 11,12 da experiência de ser queimada viva.…”

“…Ainda, no Ceará, seres humanos aniquilados socialmente por doenças infecciosas carregam marcas e cicatrizes da iniquidade socioeconômica, a realidade injusta, inscrita no corpo, silenciada e pouco estudada nos aspectos subjetivos 11 . Fora das estatísticas nacionais e longe dos noticiários, a queimadura simboliza o estigma humano 11,12 da experiência de ser queimada viva. Sobrevivendo na pobreza e na exclusão social, a voz e os gritos da mulher nordestina são, frequentemente, silenciados pelo medo da violência de gênero 6,8,13 .…”