June 23, 2020

When Autism Advocacy Is "Partial"

From Psychology Today, written by Amy S.F. Lutz:

It may seem like there are many different issues splitting the autism community—including fights over educational, vocational, residential, medical, and therapeutic services. But these battles really boil down to just one question: Who decides what’s best for those who can’t speak for themselves, the severely autistic individuals who will require upwards of $2.4 million in care over the course of a lifetime, each? Should it be parents, or should it be autistic self-advocates?

For the past four years, I’ve been privileged to work with three Penn colleagues, Matthew McCoy, Emily Liu, and Dominic Sisti, mining literature in bioethics, political philosophy, and history for guidance in crafting a framework that would be helpful in analyzing these debates. In March, our article “Ethical Advocacy Across the Autism Spectrum” was published in The American Journal of Bioethics. In the article, we suggest a new concept, “partial representation” to describe advocacy that is both incomplete and biased—in other words, “when an actor claims to represent a particular group of people, but appropriately engages with only a subset of that group.”

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