Carol’s existence was clouded not only in obscurity but also in error of gender. In 1935, when Pearl Buck married Richard Walsh, her publisher, after divorcing Lossing Buck, The New York Times’ report of the marriage referred to her as “the mother of a son, 15, and a daughter, 10, by her first marriage.” (The ten-year-old daughter was Janice Buck, now Janice C. Walsh, who wrote the Afterword for this revised edition.)
Pearl Buck also wrote a highly autobiographical novel, The Time Is Noon, in the mid-1930s, but it was considered too personal to publish. It would have revealed much about the author’s life — including “an inadequate first marriage,” as she called it, and the retarded child whose existence she worked so hard to conceal from her public. The Time Is Noon was not published until 1967.
As Carol adjusted to life at Vineland and her mother wrote prolifically, other developments were occurring that would affect later generations of mentally retarded children. For example, between 1921 and 1932, the Iowa PreSchool Laboratory studied children who entered preschool at an average age of forty-two months. The study found that they had a mean gain of sixteen IQ points over an eighteen-month stay in preschool. Later tests demonstrated that their IQ gains could be maintained for an average of twelve years if they stayed in school.
Another study that would provide further evidence of the benefits of early childhood education was published in 1930 by researchers H. M. Skeele and H. B. Dye. For their small but significant study, presented to the American Association on Mental Deficiency, Skeele and Dye selected thirteen orphans under age three with an average IQ of 64. The children were moved from their orphanage to an institution for the mentally retarded where older patients and attendants offered them social and mental stimulation. Another group of twelve children, with an average IQ of 87.6, composed a control group and remained in the non-stimulating environment of the orphanage.
After eighteen months of living in the more stimulating atmosphere with adults, the first group gained 27.5 IQ points. After thirty months of languishing in the orphanage, the second group’s average IQ dropped an average of 26.2 IQ points.
Skeele and Dye kept track of these children and twenty-one years later, did a follow-up study. All thirteen in the first group had become self-supporting, all had moved out of institutions for the retarded, and their average level of schooling was twelfth grade. Of the twelve in the second, unstimulated group, five still remained in institutions (though one had died), and the group’s average school level was third grade.
It would be another generation before Skeele and Dye’s research findings would be applied to wider practice. By demonstrating that early stimulation can accelerate a child’s cognitive growth and a lack of stimulation hinders it, their work foreshadowed Head Start programs for impoverished preschoolers and early intervention programs for children with developmental delays.
During the 1930s and early 1940s, FDR was sending the world a message: a physical handicap need not be a stigma. Roosevelt’s example has been cited as a motivating force behind Pearl Buck’s ultimate decision to tell the world about Carol. What FDR did for people with physical handicaps, she hoped to do for those with mental handicaps. Her decision to write The Child Who Never Grew was not motivated by confessional soul-baring. She had a greater goaclass="underline" she wanted Carol’s story to help others. Ms. Buck believed that Carol’s life could be “of use in her generation,” that her story “must be of use to human beings…her life must count.”
In the 1950s, some medical and social advances were made to enhance the lives of people with mental retardation. For example, the etiology of phenylketonuria (PKU), a congenital disease resulting in metal retardation, was found to be the inability to metabolize an essential amino acid. Once PKU’s cause was discovered, testing and dietary treatment became available soon after birth. In 1959, three French scientists discovered the cause of Down syndrome: a genetic mishap near the time of conception caused an extra chromosome in every cell of the body. Such scientific information helped parents to understand that they were not at fault. Nature is imperfect. Prior to these medical discoveries, many parents typically believed that they could have prevented their child’s mental retardation. A former teacher of mine, for example, thought that a minor automobile accident when she was pregnant had caused her son to be born with Down syndrome. We know today that many forms of mental retardation result from genetic accidents or other unforeseen causes, but also that others do have environmental causes such as substance abuse during pregnancy.
While the 1950s and 1960s brought certain advances, it was often a dance of three steps forward and two steps backward. Across the country, many state institutions sprung up or expanded, warehousing thousands of mentally retarded persons in huge facilities. Had Ms. Buck’s writing career not been so successful and she had been unable to afford a private institution for her daughter, Carol might have resided at a mammoth public institution called Pennhurst in eastern Pennsylvania, not far from where Pearl Buck moved after leaving China permanently. In 1950, Pennhurst housed 2,600 persons. Established in 1908 for 500 residents, Pennhurst at its most crowded was home to 3,200 people. After a thirteen-year landmark lawsuit, it was closed in 1987 and its residents were moved to small group homes.
Although institutions thrived through the 1950s and 1960s, a greater public acceptance of people with mental retardation slowly began to grow. The National Association for Retardation Children was founded in 1950 to lobby legislators and improve public awareness. (The organization later changed its name to the Association for Retarded Citizens and again in 1991 to “The ARC” because it maintains that the word “retarded” carries a stigma.) In 1954, a “Creed for Exceptional Children” was proclaimed at a U.S. Office of Education Conference on Qualification and Preparation of Teachers. The driving force behind these efforts were parents, parents like Ms. Buck who wanted a better life for their children and those who would be born with similar problems in the future.
Pearl Buck was a strong supporter of parents. She wrote many letters of encouragement, including one in 1952 to a mother who was organizing other parents on behalf of their children: “…The primary problem of parents such as we are is to awaken the public to the rights that retarded children have. It is a strange thing that in our great friendly democracy these little retarded children…receive no attention and little help of any kind from state or community. Yet many of the children could be aided to became useful citizens if they had special training and could work in a protected environment.…I am deeply interested in such groups as yours, for it is the parents of retarded children who must awaken our people.…The parents must stir up the community not only to give these children every opportunity for life, but also to treat them as human beings.”
Another milestone for people with mental retardation was the Kennedy family’s revelation that they had a sister who was mentally retarded. Rosemary Kennedy was born two years before Carol Buck. Like Pearl Buck, the Kennedys struggled for years with Rosemary’s delayed development. Denial gradually gave way to acknowledgment. Family friend and presidential speechwriter Theodore C. Sorensen has written that President John F. Kennedy was very sensitive to press stories about Rosemary “until the whole family decided that a more matter-of-fact attitude better served the fight against mental retardation.”