Reimagining Childhood: Responding to the Challenge
Presented by Severe Developmental Disability
Erica K. Salter
Published online: 2 June 2017
Ó Springer Science+Business Media Dordrecht 2017
Abstract Through an exploration of the experience of severe and profound intel-
lectual disability, this essay will attempt to expose the predominant, yet usually
obscured, medical anthropology of the child and examine its effects on pediatric
bioethics. I will argue that both modern western society and modern western
medicine do, actually, have a robust notion of the child, a notion which can ﬁnd its
roots in three inﬂuential thinkers: Aristotle, Immanuel Kant and Jean Piaget.
Together, these philosophers offer us a compelling vision: the child is primarily a
future rational, autonomous adult. While this tacit understanding has arguably
widespread effects on such things as our concept of good parenting, of proper
schooling, and so on, I will focus on the effect is has on the treatment of children
with severe developmental disabilities. When examined in light of this population,
the dominant medical anthropology of the child will be shown to be deﬁcient.
Instead, I argue for an expansion—indeed, a full reimagining—of our notions of
childhood, not only to re-infuse dignity into the lives of children with SDD, but to
better represent the goods of childhood, generally.
Keywords Child Á Childhood Á Disability Á Pediatric decision-making
Yet she is so limited. She cannot speak. She cannot even say ‘‘Mama’’—
though sometimes we think she says ‘‘Aylu’’ (our translation, ‘‘I love you’’).
She can only ﬁnger feed herself, despite the many efforts at teaching her to use
& Erica K. Salter
Saint Louis University, St. Louis, MO, USA
HEC Forum (2017) 29:241–256