Abstract
Through an exploration of the experience of severe and profound intellectual 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.
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Notes
Notably, severe developmental disability is not just a challenge to our notion of childhood, but insofar as our notions of childhood are directly derivative of specific notions of proper adulthood, they also challenge our dominant frameworks of personhood, generally.
Certainly the influence could be traced back to many additional sources, as well, but these three have been chosen as playing a particularly instrumental role in the construction of our modern understanding.
The notion of child as an “incomplete” or a “not yet” adult emerges in other influential texts. For example, in Centuries of Childhood (1962) Phillipe Aries, a French historian, notably argues that “childhood” is actually a modern concept, first emerging in the 17th century, instead of the enduring, objective life stage we think it is. By analyzing paintings and writings from the Middle Ages, he concluded that Medieval society did not view childhood as a distinct period of life; instead, children were merely small, inadequate adults, lacking in the capacities of adulthood.
The centrality of rationality and freedom figure prominently in many other influential modern philosophers’ notions of childhood, as well. Notably, liberal 17th century philosopher John Locke in Some Thoughts Concerning Education and Of the Conduct of Understanding believed that because a child’s mind was a “blank slate” until it had worldly experience, a child was trainable and, therefore, an emergent free individual (1996). Even distinctly feminist existentialists like Simone de Beauvoir (1948) hold freedom as a centering value, emphasizing the existence of the individual person as a free and responsible agent.
Beyond medicine, several philosophers have explored the dangers of a “hyper-cognitive” view for moral philosophy and moral status specifically. In particular, see Stephen Post’s The Moral Challenges of Alzheimer Disease (1995), which challenges the modern philosophical trend of premising moral obligations on cognitive functions from the perspective of care for those with dementia and Eva Feder Kittay and Licia Carlson’s Cognitive Disability and its Challenge to Moral Philosophy, where Kittay draws on her experience of parenting Sesha to critically engage the “hyper-cognitive” arguments mounted by Peter Singer and Jeff McMahan.
It should be noted that the AAP, in particular, has given much attention to the needs of children and families with developmental disabilities, advocating for early identification and surveillance, the availability of more comprehensive services and resources and patient- and family-centered care coordination (see AAP Council on Children with Disabilities 2006, 2014, 2016). This work has been essential in coordinating quality care for children and families but it still relies unreflectively on a particular, impoverished notion of childhood which, although certainly unintentional, has still had negative impacts on this population, in particular.
Many sociologists have even argued that childhood has its own culture, one distinct and not derivative from adult culture, based largely in the activities of imaginative and unstructured play (James et al. 2004, pp. 81–100).
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Salter, E.K. Reimagining Childhood: Responding to the Challenge Presented by Severe Developmental Disability. HEC Forum 29, 241–256 (2017). https://doi.org/10.1007/s10730-017-9331-6
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DOI: https://doi.org/10.1007/s10730-017-9331-6