Why Disability Advocates Are Trying to Shut Down A Policy That Benefits Disabled People

A sad and fascinating case study from the new book "Chasing the Intact Mind"

In the very first sentence of Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most, author Amy S.F. Lutz explains the striking term in her book’s title:

In her 2006 memoir Strange Son, Portia Iversen coined the phrase “intact mind” to describe the typical cognitive abilities she believed were buried within even the most seemingly impaired autistic individuals, like her son Dov—who, at nine years old, was completely nonverbal and spent much of his time “chewing on blocks and tapping stones.” Although he didn’t know the alphabet, colors, or numbers; although he “could hardly point or nod his head to show what he meant”; although doctors had diagnosed Dov as “retarded” and told Iversen she “shouldn’t wreck [her] marriage and destroy [her] other children’s lives for his sake, when doing so was utterly and completely useless”—although all these things were true about her son, Iversen still imagined him “falling down a deep well, believed to be dead. And then years later, a light shone down that dark shaft and I could see him there, somehow still alive” (emphasis in original). [citations omitted here and throughout]

Lutz, a historian of medicine at the University of Pennsylvania who has previously written a book about her experiences raising a son (now an adult) with severe autism, goes on to lay out a fascinating history of this concept in the first half of Chasing the Intact Mind. She focuses heavily on memoirs written by parents of children with autism, showing how at every stage in the modern history of our understanding of this condition, such parents have pined for — and in some cases gone to herculean and frequently pseudoscientific lengths to free — the “intact mind” supposedly lurking behind their severely disabled child’s troubled exterior. It’s often quite difficult for these parents to accept that their experiences raising kids with severe autism, which can involve the everyday management of violent tantrums, obsessively repetitive behavior, and problems with toileting and basic communication, reflect not a temporary challenge that will be overcome, with a “normal” kid waiting at the other end of a journey, but rather simply who their child is and will always be. But sometimes, unfortunately, that’s the case.

Given my lack of familiarity with the history in question, I don’t have much to say about the first half of Lutz’s book except that it was brisk, stimulating reading. The second half is more relevant to real-world policy debates, because that’s where she argues that the myth of the intact mind has caused significant damage to disabled people — damage at least partially inflicted by activists claiming to represent that very same group.

I was most fascinated by the first chapter of the second half: “The Fight to Eliminate 14(c).” It’s quite a story. Let’s use a lengthy excerpt from the top of that chapter to fill in the basics: