disability; Islam; South Asia; Ladakh; Himalayas; religion; health care
摘要
The purpose of this ethnographic study of disability in Ladakh, India is to understand disability as a subjective experience influenced by culture and the physical environment. Disability research demonstrates many of the social and physical challenges faced by those with disability and their families. However, these experiential domains are too often treated in isolation and do little to represent the lived reality of people with disability and those close to them. Additionally, research shows attitudes toward disability are often rooted in religion and local models of health, yet does not take the next step relating how such factors shape experience. While it is widely recognized that disability experiences are not homogenous, little attention is paid to intra-cultural variations that result from diverse local attitudes. By exploring experiences of disability in the context of two religions, Buddhism and Islam, this study contributes to debates within disability studies and provides a better understanding of disability in the context of culture. The study objectives were: (1) to ascertain local definitions and attitudes toward disability in Ladakh; (2) to identify challenges the physical environment of Ladakh poses to people with disabilities; and (3) to determine the influence of religion on the management and experience of disability. Research included three overlapping study components – a village study; a study at a disability NGO; and a broader community component – designed to gain understanding of experiences through the viewpoints of disabled individuals, family members, community members, and professionals. This study concluded that in Ladakh disability is defined and identified through a combination of observable traits and causes, often characterized by religious explanations and influenced by age. Religion shapes the social management of disability, influencing attitudes about disability and the life chances of people with disabilities, and how people experiencing disability seek care from religious and health professionals. Limitations posed by the physical environment shape experience, and impact availability and accessibility of services. There is a dissonance between experiences of disability and expressed needs which leads to disconnects between traditional values and experience as people with disabilities approach their own futures in the context of social change in Ladakh.
