- Downs: The History of a Disability by David Wright
Around six o’clock on the evening of September 22, 1943, John F. Noxon, Jr., a prominent attorney in Pittsfield, Massachusetts, telephoned Dr. George P. Hunt, his family’s pediatrician. Noxon, with anxiety in his voice, asked Dr. Hunt to come at once. His six-month-old son, Lawrence, had apparently entangled himself in wires and had received a terrible electrical shock. When Dr. Hunt arrived, he found the dead “mongoloid” baby dressed in a shirt and a wet diaper. A few days later Noxon was arrested, and for the next five years the citizens of Massachusetts followed in their newspapers the trials, verdict and death sentence, appeals, pardon, and parole of this “mercy killing.” Adding to the public’s curiosity were two striking coincidences. Lawrence would die by electrocution, and his father would be sentenced to the state’s electric chair. And like six-month-old “mongoloid” Lawrence, forty-six-year-old John Noxon had a disability, polio.
Not long after Lawrence’s birth, medical specialists at Boston’s Children’s Hospital told John F. Noxon and his wife, Margaret, that their son’s “mongolism” meant that the child would never grow normally. He would be unable to care for himself, and he would burden the family—all prognoses that David Wright, in his compelling book, reminds us were commonly given to parents of the syndrome we now call Down.
Beginning with the Elizabethan Poor Laws, Down syndrome was an unidentified condition associated with one group of the deserving poor: “idiots.” As Wright notes, idiocy required religious, legal, and eventually medical consideration because “idiots,” like “lunatics,” were unable, it appeared, to care for themselves and to manage property they might inherit. By the time of the Enlightenment in Europe, Locke’s claim that the senses were the beginning of mental reasoning led teachers like the Frenchman Edouard Séguin to attempt, quite successfully, what had previously thought to be the impossible—the education of “idiots.”
Although institutional authorities had observed among their residents certain familiar types of “feeble-mindedness,” it would not be until 1866 that the English physician John Langdon Down identified a form of congenital disability that he called “mongolism.” Influenced by ethnographic-racial divisions associated at the time with particular cranial and bodily features, Down saw in this type a decline to a race more primitive than the superior Caucasian race. Hence, the children of Caucasian families who reverted to the “mongolian type,” like those individuals [End Page 284] that Down had observed, experienced a pathological decent to a primal racial form. As Wright points out, through close observation and the use of photography, Down identified characteristics of his newly labeled type of “idiocy.”
By the first decades of the twentieth century, the racial association of “mongolism” had fallen out of favor, but authorities soon linked the condition to the emerging eugenics movement. “Mongoloids,” like other groups of the “feeble-minded,” needed protection, especially protection from breeding more of their own kind. To accomplish this end, medical experts along with prominent politicians called for institutional segregation and sterilization.
In the midst of the eugenics enthusiasm, the English physician Lionel Penrose developed an interest in Down syndrome that departed, at least in part, from eugenics. Penrose observed that the condition occurred more frequently in mothers who were over the age of thirty-five. The hereditary linkage continued to puzzle scientist until the 1959 discovery by Jerome Lejeune and also by Marthe Gautier (who, Wright points out, failed to receive credit likely due her). Yet the advent of genetic testing has proven to be a mixed blessing. Today most North American women who discover through prenatal testing that they will bear a child with Down syndrome are likely to abort the fetus. Wright leaves his reader wondering if the elimination of this disability is a good thing. Contrary to the claims of past generations of medical and educational authorities, like those who advised the Noxons in 1943, we now...