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% 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; Stereotyping; Metaphor New science of stigma In a 2006 The Lancet article, Keusch et al. 1 call for a “new science of stigma”. They set an ambitious global research agenda: building a conceptual framework and an evidence base for interventions to reduce discrimination and social exclusion. Biomedical and behavioral scientists alike are invited to contribute. For Castro & Farmer 2, psychological factors are insufficient to explain stigma. Structural violence caused by macrosociological forces – poverty, class disparity, illiteracy, political corruption, racism, sexism, inequitable allocation of health resources and hegemonic doctor-patient relationships – generate social inequities and sculpt stigma experiences. Decontextualized explanations blame victims for pejorative self-images 3. Kleinman 4 argues that stigma is best comprehended as moral experience, configured within a local world amidst danger and uncertainty. What is moral, he says, embodies our sense of right and wrong yet “to be understood requires ethical scrutiny from the outside and from those on the inside who challenge accepted local values” 4 (p. 2). Throughout history, leprosy (Hansen’s disease) has been shrouded with stigma, despite being one of the least contagious human transmissible diseases 5. Caused by a bacillus bacterium, Mycobacterium leprae, it is a dreaded disease, provoking peripheral nerve damage, skin sores, progressive debilitation and gross disfigurement. ARTIGO ARTICLE Nations MK et al. 1216 Cad. Saúde Pública, Rio de Janeiro, 25(6):1215-1224, jun, 2009 Known as the “illness of untouchability” in the ancient Indian Caraka Samhita medical text, it is attributed to moral transgressions: “untruthfulness”, “sinful acts”, and “blasphemy against the gods” 6. In Pakistan, leprosy-affected “sinners” are abandoned by spouses, divorced, expulsed from villages, left to beg on city streets and confined to animal quarters 5. Even the 1981 introduction multi-drug therapy (Dapsone, Clofazimine and Rifampicin) – highly effective against both paucibacillary and multibacillary disease forms – has not eradicated leprosy’s stigma 5,6. As with infectious cholera 7, popular resistance to control is subliminal, albeit strong 5,6. Some 30% of Pakistani patients dropped-out of multidrug therapy; 54% denied ever having leprosy or proclaimed themselves “cured”, prompting Mull et al. 5 (p. 805) to declare that: “clearly ‘non-compliance’ relates to the stigma attached to ‘lepers’, together with the common idea that equates leprosy with deformities”. Brazil – second behind India in newly detected cases – reports a high prevalence of Hansen’s disease (4.6/10,000 inhabitants in 2001), climbing to 6.13/10,000 inhabitants in the Northeast 8. While poverty, inequality, urbanization, low educational level and food shortage are known risk factors in Ceará State 9, stigma’s influence is unknown. Qualitatively, however, the Portuguese word lepra (leprosy) is synonymous with grotesque deformities. The derogatory term leproso (leper) labels anyone ostracized by society. Even thirty years after its official name change to stigma-free Hansen’s disease (hanseníase), lepra’s pejorative connotation persists 10. Queiroz & Puntel 11 report that 50% of M. leprae-affected in Campinas, São Paulo, Brazil, distinguish between the two terms, considering them separate diseases or different stages of the same disease – lepra the most severe. Depression, sexual impotency and suicidal thoughts are reported and dermatological symptoms are disguised as “sun” or “pregnancy spots”; informants avoid kissing children and spouses and separate their utensils 11,12. In São Paulo, women with leprosy, when compared with men, are more often single, separated or divorced, live with family and children rather than husbands or partners, reside at the same address for a shorter duration, work in domestic occupations without benefits, have less education and attend religious cults 13; 37.1% reject multi-drug therapy. Leprosy, by all accounts, is a demoralizing disease. Social theories of stigmatization Social scientists have investigated stigma since the 1960s, yet disagree on theoretical approaches. Early classics emphasized the origin of stigma as an intersubjective, psychological process. Goffman 14 postulated that stigma occurs when the construction of categories is linked to stereotyped beliefs that label and distinguish people as different or unacceptable. They either resist stigmatization with cover-up strategies or internalize a negative self-perception, “spoiling” identities and reputations. British anthropologist Douglas 15 argued that stigma is symbolically constructed when personal identities are associated metaphorically with “impure” images – raising doubts about his/her integrity, honesty, sexual purity, etc. – “polluting” the moral essence of personhood. In Hong Kong, patients in treatment for schizophrenia were reportedly stigmatized by structural discrimination – inequitable health policy, resource allocation and service organization which privilege service providers’ control over users 16. In a Brazilian shantytown, poverty, class disparity, police violence, and militaristic interventions shape and signify cholera stigma for infected residents 7. Studies of leprosy stigma have continued to target cognitive processes of infected individuals 17,18. Exceptionally, Opala & Boillot 19 report that among the Limba of Sierra Leone, Africa, stigma varies according to social context and access to effective therapy. Stigma is severest and unresponsive to medications when onlookers view the “leper” as morally corrupt and fear both the individual and the disease 19. The Limba’s various interpretations of leprosy stigma, within a single culture, suggests it is multivocalic 20. Indeed, stigma is complex and, we suspect, at the heart of leprosy in Northeast Brazil. How structural forces shape its moral experience in this poor, tropical setting is unclear. Through patients’ voices, we aim to reveal the semantic network 20 of lepra in an endemic community.