Abstract: This symposium includes twelve personal narratives from parents of children with Down syndrome. These narratives foster better understanding of these parents' experiences of learning that their child has Down syndrome, navigating sometimes labrynthine medical, educational, and social services bureaucracy, and contending with an implicitly—and sometimes explicitly—ableist culture. Four commentaries on these narratives are also included, authored by experts and scholars in bioethics, disability studies, health and science communication, and public advocacy. The goal of this symposium is to call attention to the ways in which the lived experiences of parents raising children with Down syndrome often differ from broader public perception, media portrayals, or even how Down syndrome is viewed and discussed among healthcare professionals and bioethicists.
Meredith et al. (Wed,) studied this question.