Disabled families : the impacts of disability and care on family labour and poverty in rural Guatemala

Abstract

An increasing body of literature has started to look at how disability impacts and shifts poverty in the global South in and through a range of areas, including health, education, and livelihoods. However, much of this research is limited to disabled individuals, while qualitative research focusing on and articulating the circumstances, needs and demands of rural families remains scarce, especially research focusing on Latin America. This paper reports on a qualitative study looking at how disability affects family labouring patterns in rural Guatemala, with a special focus on women carers of people with acquired physical impairments, in the bid to contribute to a more inclusive understanding of the disability and poverty relationship and its gendered dimensions. Findings highlight how in rural communities already living in dire poverty, the fragmentation of labour input of the disabled person, costs (notably health care) and intensified collective poverty, push fragile families with no safety nets into a set of dynamic responses in the bid to ensure survival of the family unit. These include harder and longer work patterns, interruption of paid labour, and/or induction into exploitative and perilous labour, not only for women, but also children. These responses are erosive and have severe personal, social, cultural and economic consequences, strengthening a deep, multidimensional, chronic and intergenerational impoverishment, transforming these families into ‘disabled families’, among the poorest of the poor. This paper concludes that research, policy and services need to move beyond the disabled individual to understand and address the needs and demands of whole families, notably women, and safeguard their livelihoods, because ultimately, these are the units that singlehandedly care for and ensure the well-being and survival of disabled people. It is also within these units that disability is constructed, shaped, and can ultimately be understood.