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.
Nations
Marilyn K
MK
Centro de Ciências da Saúde, Universidade de Fortaleza, Fortaleza, Brasil. nations@unifor.br
Lira
Geison Vasconcelos
GV
Catrib
Ana Maria Fontenelle
AM
D000883:Anthropology; D001633:Bible; D001938:Brazil / Q000208:ethnology; D005260:Female; D006801:Humans; D007918:Leprosy / Q000208:ethnology / Q000523:psychology*; D007922:Leptospirosis / Q000523:psychology; D007938:Leukemia / Q000523:psychology; D008297:Male; D019365:Metaphor; D011287:Prejudice; D012660:Semantics; D012917:Social Adjustment; D013240:Stereotyping