Childhood, Youth, and Adolescence

It is a truism for parents: The birth of a child is a transformative experience. Priorities, perspectives, and plans change. The power of the child to transform adults is almost boundless. Like a bioemotional philosopher's stone, the child transmutes an adult into a parent. This change often compromises primal urges, such as self-preservation, changing them into a stronger urge of self-sacrifice for the child. Certainly, there is a measure of biological imperative here, the propagation of one's genes, making the self-sacrifice in fact a kind of self-preservation and a hoped-for immortality, but the motivations are also cultural and psychological.

This truism is even more applicable for the child with a disability. Such children have an incredible power to transform the world and the people around them. For example, children with seizures, limps, and sensory impairments were carried hundreds of miles by their parents to be cured at medieval saints' shrines. Children with disabilities at medical institutions in nineteenth-century Europe altered the development of a wide spectrum of medical professions as well as the distribution of government budgets and private organizations. In mid- to late-twentieth-century America, the children of the March of Dimes drives and muscular dystrophy telethons inspired extraordinary numbers of people to charitable action. Similarly, the experience of disability in childhood has radically altered the personal development of world leaders, artists, and writers, as well as ordinary people. While international and national debates have raged across time about how to "respond" at a systemic level to children with disabilities, their individual and collective impact on humankind has been profound and irrefutable.

The interface of the child and of disability exists at multiple levels. These include (1) children with disabilities themselves, (2) the families of children with disabilities, (3) children in families with other children with disabilities or with parents with disabilities, (4) societywide care systems for such children, and (5) social perceptions of children with disabilities and the impact of that perception on adults with and with out disabilities. These patterns have played out across time and culture with remarkable variation and simi larity. What follows is a brief suggestion of the many examples of the role of children and disabilities in our societies.