Paper short abstract:

Little has been written about disability in Mexico, although the issue has become increasingly visible in recent decades. Using the analogy of ‘disability worlds’ this paper explores the different local and global tensions that families encounter outside and within a charity care centre.

Paper long abstract:

Based on fieldwork conducted at a Mexican charity, this project seeks to answer the question: how do parents make sense of their children's congenital diseases in the absence of adequate health care and government support? The notion of 'disability worlds' is used to explore how disability and parenthood are negotiated in different local and global settings available to the families coming to the charity. It is argued that those forms of institutionalised oppression that still exist in Mexico-what is defined as 'structural violence'-play a defining role in these families' trajectories. Parents' accounts reveal that reproductive rights are often being compromised in the context of public health, and access to care and information for people with disabilities is still insufficient. Parents lamented that in Mexico there are no patients' associations, and that the government provides a limited amount of disability benefits. Looking at the available literature on disability in Mexico, it becomes apparent that human and civil rights are not central in the Mexican disability discourse. Yet, examining the charity's recent engagement with the UN's Convention for the Rights of Persons with Disabilities, it is pertinent to question whether the global disability narrative is applicable in, and useful to, the Mexican context. By using the analogy of the local and the global, inequalities experienced by children with congenital diseases, and their families, are explored both on a micro and macro level.