Art Caplan and NBC News Fail at Understanding Autism

Art Caplan, a bio-ethicist who’s never seen a spectacle he can’t reflect, has offered an opinion regarding a Wisconsin family’s decision authorizing the modification of their autistic son’s  vocal cords. You can read Caplan’s OpEd–I simply have the following to offer–that nowhere in this story is there any evidence of a broader and more comprehensive and yes, “humanistic” approach to working with the young man’s vocalizations (characterized as intolerable screams); nowhere is there a suggestion that speech-language pathologists or wonderful programs like “Heeling Autism” at Guiding Eyes for the Blind (which provides autistic kids with professionally trained Labrador Retrievers as a means of helping them with anxiety) were in any way consulted. This is a story about the “medical model” of disability and the decision to alter a child’s vocal cords is presented as obvious. But it isn’t obvious. In fact it was a utilitarian decision–one of easy convenience, and which is now being justified as the inevitable “thing” a matter that will potentially do real harm to young people with autism. I’ve long held that we need to “presume competence” when we are among non-speaking people. We do not alter their bodies because they are inconvenient. My blindness is inconvenient. Should I be modified so people don’t have to see it? That’s what asylums were all about. If a boy with autism screams perhaps he has something he wants to say. Perhaps he needs to have more knowledgable and nuanced accommodations. Art Caplan knows less about this subject than my auto mechanic. But he has a Ph.D.. I haven’t seen Dr. Caplan at leading conferences by and for people with autism. I haven’t seen him at the Society for Disability Studies. I suspect his understanding of physical difference is entirely mediated by neo-Victorian medicine. As for NBC–their reporting on disability issues usually tends toward the lachrymose and sentimental so their genial platform isn’t surprising in this instance. Apparently both NBC and Caplan believe knee-jerk opinion beats complexity. Their motto is like the tape loop in airports: “If you see something, say something.” I grieve for any person with a disability who is modified to suit the easy utility of medical modeling.  

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