Cultural Schema and Suffering from Leprosy (A Case Study of Green Pasture Hospital and Rehabilitation Center, Pokhara)

Abstract

Leprosy has been a highly stigmatized disease from the remote past. Its antiquity goes as far back as our history of civilization. Still in this period of nanotechnology, we have accompanied by those archaic values. Those who have suffered from leprosy are two dimensional sufferers of disease and society. Participation restriction, loss of income,boycotting from job opportunities, psychological harassment, ignorance from close relativesand low social status are common matters among them. In this study, researcher has tried to know the cultural world view of leprosy of community people (non-patients) around the periphery of rehabilitation center. In the same study participation restriction of leprosy patients and their lifelong experiences of suffering have tried to reveal. It was carried out in three different areas (Lamtara Rehabilition Centre,Tutunga Camp and GPH of Pokhara). Total eighty respondents were taken for the interview.Fifty-five respondents who were non-patients but neighbors of leprosy patients were selected for cultural schema of leprosy. Twenty-five respondents (patients) were asked for participation restriction. Twenty respondents who were also involved in the study of participation restriction were asked for their lifelong experiences of leprosy. Semi-structured interview schedule were launched for cultural schema, a standard scale (P-scale) was used for participation restriction and in-depth interview was carried out for suffering.This study was carried out qualitatively and quantitatively both. Secrecy and neutrality had maintained as far as practicable. In this study, respondents’ views such as leprosy appears due to the weakness of blood, no believe in divine curse, poor explanation of germ theory, contraction of leprosy through sexual intercourse and prohibition of physical contact were the facts of personalistic cause.Comparing the schemas on different aspects between two generations (i.e. < 40 years and 40> years), some sort of positive changes were noted in favor of leprosy patients. Regarding with different kinds of stigma, enacted stigma (imposed by outsiders)was being sharply reduced but internalized stigma (perceived by patients)was still working strongly. This internalized stigma had adversely affected marital lives (i.e. refusing marriage proposal and demolition of marriage prospects) and enacted stigma was found to be responsible for economic constraints (even in new generation also). In case of ‘Suffering’, many respondents were suffering from economic problems and break up of marital ties. Similarly, they were ignored from their own relatives, had been homeless, were suffered from psychological morbidity, had lost creativity and in their late age they were just waiting for death. They were x expelled from their birth places and had missed relatives forever. Their parental property had seized by their own relatives. They had lost their rights to entertainment. They had become beggars, cheaters, disposed laborers. They had even the problem of bus fare and regular checkup. They were suffering from home sickness, had contemplated for suicide and had tried torush from hospital premises. They had no citizenship card, were not getting allowance for disabled and were refusing discharge from hospital. Some of them were forced for sterilization, changed religion for two times and were refusing government allowances. At last, it was concluded that leprosy patients are being victimized by family members, their relatives, from community and state at large.