The Lived Experience of Caring: The Voices of Mothers of Children with Disabilities in Cardenas, Cuba

Abstract

Cuba's community-based health care system is both internationally renowned and the signature of the Cuban revolution. Since the time of Cuba's catastrophic economic crisis known as the Special Period in Time of Peace, the health care system has been closely linked to the state's political legitimacy and the nation's economic development. The Special Period also led to the state's self evaluation of institutional practices in health and social sectors. Lack of disability services and resources to meet the needs of individuals with disabilities and their families was a key finding of the state's assessment. The intent of this study is to present how, during Cuba's Post Special Period, structure and culture come together to help in understanding the subjective experiences of women who care for their children with disabilities in a specific context, the community of Cardenas, Cuba. The experiences of women who mother their children with disabilities were examined through survey, semi-structured interactive interviews and observation of mother-professional interactions in the rehabilitation gym of El Centro de Rehabilitacion y Neurodesarrollo, the site where this study was conducted. This study shows that structural and cultural conceptions of disability, gender, and the authority of health professionals are reflected in how mothers understand their children's conditions, enact their roles as mothers, and navigate institutional arrangements. The dominance of Cuba's health care within the society strongly influences the construction of disability as strictly a medical phenomenon. The continuation of significant structural economic constraints clearly has an impact on the methods mothers use to gain resources for their children and access services. Cultural expectations that mothers with children with disabilities embody traditional "good mother" archetype contradict the state's legislated position of gender equality. This study reveals group differences in how mothers accept or reject the dominant discourse surrounding disability by examining how they explain their children's conditions, the visions they hold for their children and their role in promoting their children's progress. Within group differences are explained by individual location in the social structure, class. The three different approaches that mothers take on in the care of their children are described as provincial, community or cosmopolitan. These categories are distinguished by mothers' educational level, geographical location and their access to material and informational resources. We can conclude that Cuba's economic crisis and a recovery plan that included capitalist initiatives played a role in augmenting economic stratification, resulting in a new but somewhat hidden class structure within this socialist nation. Thus the everyday lived experience of mothers who care for their children with disability in Cuba is influenced by the society's structural and cultural arrangements.