Problems, acceptance and social inequality: a study of the deformed leprosy patients and their families

Though the impact of social inequality on health conditions is widely known, its impact on the chronic and stigmatized disease, leprosy, has received little attention. Deformity sometimes leads to disabilities and to handicaps causing problems to the patient and his family. In this paper an attempt has been made to understand the impact of social inequality, prevalent in the form of the caste system in India on the deformed leprosy patients and on their families. This impact was examined in terms of the problems faced by the patients. A sample of 150 deformed patients and their families, drawn from two districts in Tamil Nadu, was selected for the study. About 57% of the deformed patients experienced their deformity as a handicap which caused social and economic problems while the rest did not. Of the three caste groups, the Lower Caste group experienced more severe economic problems while the Upper Caste group faced more social problems. The extent of acceptance of deformed patients in their family varied significantly among those facing and not facing problems due to their deformity. The deformed patients without any handicap were accepted in a large majority of their families (82%) regardless of their caste status. In contrast the deformed but handicapped patients were accepted differentially among the three caste groups with the Upper group accepting them in most of their families (80%) while in the Lower group much less number of families (54%) did. All the families of the deformed but not handicapped patients desired to keep their patients till their death irrespective of their caste status. On the contrary, while all the families in the Upper Caste group expressed their willingness to keep their handicapped patients in the family till their death, 10% in the Middle and 22% in the Lower Caste groups did not want to do so. This suggests the gradual marginalization, rejection and dehabilitation of the affected. Thus, one's caste status can be a broad indicator of the nature and the extent of handicaps and acceptance in the family. This factor needs to be appropriately taken care of for rehabilitation and disability management in leprosy control programmes.