Contextualising AIDS and human development: Long-term illness and death among adults in labouring low-caste groups in India

Abstract

This study compared evidence from two low caste labouring communities in India: a relatively modernized urban group and a rural group in a backward region. It explored their levels of ill health, their capacities to respond to adult illness and the support they received. In each region, a baseline survey of approximately 1,000 households provided background quantitative evidence with qualitative evidence was collected from about 55 families. HIV infection and AIDS deaths were found to occur in the ‘less poor’ segments of the study group in both regions. In keeping with the official data, they formed a small proportion of the overall mortality and morbidity in this group. Stigma and discrimination were found to be low but fear of stigma was high, generated by the medical response to AIDS and used opportunistically for personal gains. The study provides insights into the structural determinants of health and coping mechanisms in these communities. The best conditions for a healthy life were found in the group that had a rooted community setting, collective political power, migrant economic support and improved working conditions—the less poor rural group. While improved economic status was associated with better health status, this relationship was stronger when combined with the presence of improved working conditions, with social cohesion at family and community levels and with political power as indicated by levels of organized collective representation and identity formation in workplace, local- and state-level politics. However, the traditional forms of social cohesion are under stress and new forms, moderated by commercial relations, are proving inadequate to meet major household shocks, like adult mortality.

Acknowledgments

Research on which this paper is based was carried out under the United Nations Research Institute for Social Development (UNRISD)/Training and Research Support Centre project on Community Responses to HIV and AIDS, with the financial support of the Royal Ministry of Foreign Affairs of Norway. R. Priya co-ordinated the study in UP and C. Sathyamala in TN. We acknowledge the contributions of Dynamic Action Group, Rashtriya Samajik Vikas Samiti, Rashtriya Jan Vikas Sansthan, Penn Thozhilalarhal Sangam; Bahetu, Chhaya Sharma and Chhaya, Usha, Putul and S. Shekhar; Sujata Mody, Jeevasundari, Rebeline, A. Shrivastava, I. Chakraborty, Shahjahan, Prof D. L. Sheth and Professor, Tulsi Patel; UNRISD and TARSC, Dr. Rene Loewenson and Josephine Grin-yates; Swasthya Panchayat-Lokayan/Vasudhaiva Kutumbakam and the anonymous reviewers. Most of all we acknowledge the men and women of the study who shared the sorrow and struggle of their lives.