Parents’ management of the development of their children with disabilities: Incongruence between psychological development and culture

Being the parent of a disabled child is not easy, it is experienced as a situation marked by stress, crises and grief. As Vygotsky described eighty years ago, the development of children with disabilities and the culture do not fit as they do for non-disabled children. The development of a child with disabilities is not determined by the child’s physical defect alone, but constituted by the incongruence between the physical defect and the culture. In this study, the lives of four families with deafblind children were followed for two years. Interviews and observations were conducted in different settings. This study finds that because of the incongruence between the physical defect and the culture, it is difficult to reach and maintain the zone of proximal development for a child with disabilities. This study illustrates how the network of professionals and parents around the child can make a local congruence that creates a platform for the child’s development.