Madelaine J. was admitted to St. Benedict’s Hospital near New York City in 1980, her sixtieth year, a congenitally blind woman with cerebral palsy, who had been “looked after” by her family at home throughout her life. Given this history, and her pathetic condition—with spasticity and athetosis, i.e., involuntary movements of both hands, to which was added a failure of the eyes to develop—I expected to find her both retarded and regressed.
She was neither. Quite the contrary: she spoke freely, indeed eloquently (her speech, mercifully, was scarcely affected by spasticity), revealing herself to be a high-spirited woman of exceptional intelligence and literacy.
“You’ve read a tremendous amount,” I said. “You must be really at home with Braille.”
“No, I’m not,” she said. “All my reading has been done for me—by talking books or other people. I can’t read Braille, not a single word. I can’t do anything with my hands—they are completely useless.”
She held them up, derisively. “Useless Godforsaken lumps of dough—they don’t even feel part of me.”
I found this very startling. The hands are not usually affected by cerebral palsy, at least, not essentially affected: they may be somewhat spastic, or weak, or deformed, but are generally of considerable use (unlike the legs, which may be completely paralyzed—in that variant called Little’s disease, or cerebral diplegia).
Miss J.’s hands were mildly spastic and athetotic, but her sensory capacities—as I now rapidly determined—were completely intact: she immediately and correctly identified light touch, pain, temperature, passive movement of the fingers. There was no impairment of elementary sensation, as such, but in dramatic contrast, there was the profoundest impairment of perception. She could not recognize or identify anything whatever—I placed all sorts of objects in her hands, including one of my own hands. She could not identify—and she did not explore; there were no active “interrogatory” movements of her hands—they were, indeed, as inactive, as inert, as useless, as “lumps of dough.”
This is very strange, I said to myself. How can one make sense of all this? There is no gross sensory “deficit.” Her hands would seem to have the potential of being perfectly good hands—and yet they are not. Can it be that they are functionless—“useless”—because she had never used them? Had being “protected,” “looked after,” “babied” since birth prevented her from the normal exploratory use of the hands which all infants learn in the first months of life? Had she been carried about, had everything done for her, in a manner that had prevented her from developing a normal pair of hands? And if this were the case—it seemed far-fetched, but was the only hypothesis I could think of—could she now, in her sixtieth year, acquire what she should have acquired in the first weeks and months of life?
Was there any precedent? Had anything like this ever been described—or …
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