Acceptance, Avoidance, and Ambiguity: Conflicting Social Values About Childhood Disability.

• Author: Levine, Carol
• Position: Abstracts

15 KENNEDY INST. ETHICS J. 371 (Dec. 2005).

Advances in medical technology now permit children who need ventilator assistance to live at home rather than in hospitals or institutions. What does this ventilator-dependent life mean to children and their families? The impetus for this essay comes from a study of the experience of twelve Canadian families--parents, ventilator-dependent child, and siblings. These families express great love for their children, take on enormous responsibilities for care, live with uncertainty, and attempt to create "normal" home environments. Nevertheless, they experience social isolation, sometimes even from their extended families and health care providers. Their lives are constrained in many ways. The challenges faced by parents of technology-dependent children raise questions of justice within society and within families.

Despite their sense of being different, the parents tried to create a sense of normality in their lives and homes. Most tried to redefine normal to make it fit their children's needs by striving for stability in routines and practices, even though this sense of stability was hard-won. Some families, on the other hand, were "on the verge of unraveling," with each new incident significantly unbalancing a fragile system. Another way in which families sought normality was by camouflaging medical equipment so that it did not dominate the home. The ventilator itself commonly sat on a little table or stool beside the child's bed, hidden by a cloth or...