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University of Toronto Scarborough

ANTC68 WINTER 2013 Week 5: Self-Mortification and the Stigma of Leprosy in Northern India by Barrett Introduction  Social stigma of leprosy is far worse than the disease itself – Hansen’s Disease (HD) also known as leprosy is a mildly contagious condition that can be readily treated with antibiotics in most cases – other cases simple precaution and careful observation is all that is needed to prevent the onset of permanent disabilities  Stigma and untouchability status of lepers creates lifelong prospects of divorce, eviction, loss of employment, and ostracism from family and social networks  This disease illustrates the distinction between pathophysiology of a disease and the human experience of illness as suffering  Physical and social stigma of HD are interconnected and leprosy is best approaches as an illness of discrimination INCLUSIVE of its physical condition  Study is an ethnographic in nature looking at the HD patients in colony/ashram and squatter/street settings – 72 in total  3 destructive processes by which social stigma became physically expressed o Concealment leading to under treatment o Dissociation and self-neglect o Self-mutilation under conditions of extreme poverty  As a result of these processes, people embodied the local prejudices that exacerbated their condition in the first place The Bacteria & the Burden  Mycobacterium leprae is among the least contagious of human pathogens  Social mark of leprosy is highly contagious leading to courtesy stigma – friends and relatives of people with HD risk severe social and economic losses for their affiliations  HD is treated with a combination of three antibiotics known as multi drug therapies – non-infectious in 30 days and no infected in six to nine months  Social stigma however can last a lifetime and follow you everywhere  Selective infection of peripheral nerves leads to limb anesthesia diminishing a person’s ability to rely on touch and pain to prevent injuries and requires constant observation to avoid injury, ulcers, etc.  Permanent neuropathy that results in physical deformities and disabilities can be avoided through the use of custom footwear and training in injury prevention – but people must be hyper aware of their surroundings and visual inspect themselves to protect themselves from injuries that they would normally be alerted by due to pain or sensation. They do not have this ability because of loss of function of their nerves Leprosy on the Ganga  2 communities o Leprosy treatment facility or ashram Kusht Seva Ashram (KSA)  Indigent squatter community beside the river Ngo Sponsored clinic outpatients Disavowal & Under treatment ANTC68 WINTER 2013 - Sita Case Study, woman in her early 40s at KSV who first noticed the disease at 14, she was prescribed a course of dapsone o Her story illustrates the tragic consequences of denial and concealment in the progression and spread of a discredited disease. o It is understandable that people would go to great lengths to conceal their conditions but this leads to delays between initial symptoms and diagnosis and adherence to medication regimens - To avoid associations with leprosy treatment people walk great distances to nonlocal clinics or avoid treatment all together - Others reported that not only were they ignorant of early signs of HD, but their health providers were as well o Latter issue reflects discrimination of another sort, for the segregation of leprosy treatment services also results in a segregation of CLINICAL knowledge - Goffman 1963: reformulation of deviance as stigma; strategies for disavowing the social mark o Sheltering – segregation within protective social environments o Passing-concealing or camouflaging the mark o Covering – minimizing tensions during social interactions - The concealment of leprosy is not only pervasive but i
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