Enabling Healthier Living through Group Empowerment: A Critical Ethnographic Study of Adolescents with Disabilities in the Urban Slums of North India

Abstract

Given the importance placed on participation and empowerment in global health initiatives, the perspective of young people with disabilities has emerged as a vital field of study. This critical ethnographic study gained insight into the perspectives of adolescents with disabilities aged 12 to 18 years who were affiliated with a community-based rehabilitation program in the urban slums of North India. The purpose of this research was to highlight the collective voices of adolescents with disabilities about their rehabilitation challenges, to explore how the culture influenced the rehabilitation challenges faced by adolescents, and to support collaborative work among adolescents with and without disabilities that would inform organizational activities. Fieldwork was conducted from January to May 2005 and October 2006 to March 2007 with 21 adolescents with disabilities, 11 adolescents without disability, and 10 community-based rehabilitation team members. Multiple data collection methods were utilized to ensure that participants could comfortably express their views.

A conceptual framework called the ‘Adolescent Group Empowerment Pyramid’ was developed that illustrates one process for empowering adolescents with disabilities and their peers without disabilities within a community setting. Group empowerment involves adolescents with disabilities working towards assuming greater ownership over their rehabilitation while collaborating with their peers. The ‘group’ concept provided the foundation for the framework because adolescents viewed the group setting as enjoyable and effective. Three areas associated with meaningful group empowerment included: group participation, group demonstration, and group recognition. Three external support factors and ten areas for nurturing the group empowerment process are also described.

Participants promoted a more liberal approach to empowering adolescents that embraced the notion of collaboration (rather than competition), interdependence (rather than independence), shared benefits (rather than individual gain), and the interaction of community groups. This approach promotes a harmonious balance between empowerment and the community, rather than an aggressive approach to gaining power over or from other marginalized individuals. Group empowerment, achieved through enabling group-centered occupations, encourages adolescents to collectively work for social and occupational justice. To ensure the sustainability of community-based rehabilitation initiatives, programs must be aware of personally meaningful factors that empower and maintain the interest of the target population.