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.”
JFK then threw the power and leadership of the Presidency behind the budding movement to improve the lives of mentally retarded people when he declared in 1963, “Although retarded children may be the victim of fate, they will not be the victims of our neglect.” Another sister, Eunice Kennedy Shriver, established Special Olympics in 1968, which has become an international program of athletic competition and physical fitness for children and adults who are retarded. The family also set up the Joseph P. Kennedy Jr. Foundation, which sponsors other programs.
As U.S. Attorney General in 1963, Robert F. Kennedy told a Congressional committee: “We visited a state hospital for the mentally retarded on a bright April day when you would have expected all the children to be playing outside. The children were inside, standing in a room which was bare but for a few benches. The floor was covered with urine. Severely retarded patients were left naked in cubicles, which suggested kennels.…Patients were washed by a device resembling a car wash.…The only toilets for the approximately seventy patients in a large ward were located in the middle of the room, permitting no privacy. The hospital’s hard-working but inadequate staff could provide at best only custodial care.”
Not all residential institutions were so inhumane, but institutionalization was the order of the day in the 1960s. Buildings were expanding to meet demand—each institution for the retarded averaged 340 people waiting for admission, as Ms. Buck wrote in her 1965 book, The Gifts They Bring (written with Gweneth Zarfoss about the positive potential of people with mental retardation).
For those who remained at home with their families, public schools provided little more than babysitting service. The “special ed kids” were isolated in classrooms of their own, or even in separate school buildings, away from their brothers, sisters, and neighbors. Many public schools refused to enroll children who were mentally retarded when they reached the usual age for kindergarten or first grade because they were considered “not ready” for school until they were older. After school age, some communities offered sheltered workshops where retarded adults worked alongside other retarded adults, assembly-line fashion, routinely sorting silverware, stuffing envelopes, or packing boxes of widgets.
The 1970s heralded a public outcry about inhumane conditions at large institutions like the one visited by Robert Kennedy. The demand for better treatment reached a crescendo and drove the “demstitutionalization” movement. Institutions like New York’s Willowbrook received such media attention that scandalous living conditions could no longer be ignored. By the end of the decade, fewer than four percent of Americans with mental retardation lived in institutions.
At the same time, parents of young children with mental retardation began to look around at institutions, public schools, and sheltered workshops. “Our children should not be doomed to a lifetime in an institution,” parents protested. “They deserve better than that!…And why do they have to stay home from public school until they are nine or ten when we’re paying taxes for all our other children to begin school at age five?…Can’t they do more than sort silverware in a workshop all day?”
Just as the 1960s and 1970s launched the expansion of rights for minorities and women, the rights of people with mental retardation would become recognized and secured in the law. But unlike minorities and women, most people with retardation needed advocates to speak on their behalf. Innovative educational programs resulted from parents banding together and confronting legislatures and service providers. Early intervention (or infant stimulation) programs for developmentally delayed babies began in the early 1970s largely because parents demanded that their children receive a head start on their education. Few had heard of Skeele and Dye’s earlier work, but most knew that if federal Head Start programs were helping economically deprived children, the same early start could benefit then-preschoolers as well.
Historic legislation was passed in 1973 and 1975 to correct past injustices. The first was Section 504 of the Rehabilitation Act of 1973, which prohibited discrimination against handicapped persons in federally funded programs and protected rights to education and to participate fully in community life. The Education for All Handicapped Children Act of 1975 (Public Law 94-142) guaranteed a free, appropriate education to every American child, regardless of handicap, an education “designed to meet their unique needs.” The goal of this law was to provide children who have special needs with individualized educational plans, created jointly by parents and professionals. Children with disabilities were to be educated in the least restrictive environment—meaning that they were no longer to be segregated away from other children. The law also applied the right of due process (the constitutional right to a fair hearing by an impartial person) to all decisions about special education. Until this legislation, due process in schools had been ignored as children routinely were deprived of educational services, expelled from school without explanation, or labelled “ineducable.”
Richard Nixon declared a national goal of reducing by half the incidence of mental retardation by the end of the twentieth century. But setting goals and passing laws mean little unless they are backed up by a commitment of funds and will, as parents quickly learned. Without adequate funding, improved educational opportunities guaranteed by PL 94-142 were empty promises. As the 1970s became the 1980s, parents again had to become a driving force—writing to legislators, speaking before school boards, occasionally marching peacefully with their children in tow—to see that educational programs for the mentally retarded were funded.
Four months after the 1981 inauguration, the Reagan administration announced its intention to repeal PL 94-142. That misguided effort failed, but the administration attempted in 1982 to weaken the law by issuing restrictive regulations (to allow states and local school systems to set their own schedules for implementing “free and appropriate education”; to diminish parental participation in educational planning; to remove handicapped children from classr
oom on the basis of their being “disruptive”; and to reduce health-related special services).
After fighting so long and hard for the enactment of PL 94-142, parents and educators were not about to sit back and let it be gutted. Washington received thousands of letters and phone calls from angry parents and professionals. This outpouring of protest forced Reagan’s Secretary of Education, Terrel H. Bell, to withdraw most of the proposed changes. But throughout the rest of the 1980s, the Federal government footed only a small portion of the total special education bill, leaving individual states and localities to respond in patchwork fashion. The irony was that, by the 1980s, educational researchers had clearly demonstrated the value of mainstreaming students. The Educational Testing Service of Princeton, for example, conducted a three-year study which showed that both handicapped and non-handicapped students benefit from integrated school settings.
Another piece of landmark legislation was the Americans with Disabilities Act of 1990. Like its predecessors, its net effect will depend on commitment and dollars. The law is not backed by Federal money, but private businesses must make a good faith effort to bring down barriers and make workplaces more accessible to disabled individuals. Some business leaders initially cried that following the letter of the law would be prohibitively expensive for them, but most are finding that not to be true. And many business people have come to realize that workers with physical and mental disabilities are often more reliable employees who cause less turnover than others.
Since the mid-1980s, the concept of “supported employment” has begun to grow. Adults with mental retardation are assigned “job coaches” who help them find a job and learn the precise skills to hold it. Once the worker learns the ropes, the job coach steps back and moves on, leaving the worker responsible to the employer. A number of major businesses (Marriott, Pizza Hut, McDonald’s, Boeing, United Airlines, and IBM, to name a few) have hired thousands of mentally retarded employees through supported employment program. In one instance, Pizza Hut hired 1,012 disabled workers (73 percent of whom were mentally retarded) and found that they stayed four to five times longer in the job than non-disabled workers. This lower turnover saved Pizza Hut over $2.2 million in recruiting, hiring, and training new employees.
Much progress has been made in recent years: Causes of mental retardation are better understood and, in some instances, preventable. Improved medical care insures a healthier, longer life. Babies and toddlers are receiving early intervention to enhance their cognitive and physical abilities. School-age children are enrolled in classes alongside non-disabled students, with special support services provided when necessary. Teenagers and young adults are learning job-related skills and participating in scout troops, swim teams, and other recreational activities. Adults are living in group homes and apartments, shopping, bowling, going to the movies, riding public transportation, working in their communities, and paying taxes.
Public understanding of mental retardation has also grown, thanks in large part to enlightened leaders in the media. An early breakthrough occurred in the late 1970s when Sesame Street included mentally retarded and physically disabled children in a regular weekly segment. One of those children, Jason Kingsley, went on to act in an episode of The Fall Guy, a television series starring Lee Majors. And a made-for-TV movie was filmed about Jason’s life. More recently, the ABC network series, Life Goes On, features as one of its stars Christopher Burke, a young man who has Down syndrome. Other television programs—including L.A. Law and Kate and Allie—have used non-disabled actors to portray adult characters with mental retardation. Children with obvious handicaps are now beginning to appear as models in advertisements for children’s clothing and toys.
How might Pearl Buck look upon these developments? As both the parent and humanitarian she was, Ms. Buck would undoubtedly be heartened by the overall progress in wider acceptance and opportunity. Although Carol lived all but nine years of her life in an institution, Pearl Buck was not an apologist for institutionalization. She knew that retarded children had great gifts to offer, including the “intangible quality of love,” as she wrote in The Gifts They Bring. She believed that those gifts should be spread around. In The Gifts They Bring, she foresaw the future when she described a community as an “enlarged family” enfolding not only the strong and able but “the weakest and most helpless” as well. She wrote, “And by providing the atmosphere in which he (the retarded child) can grow, we provide the atmosphere for all to grow. We do not believe in segregating the retarded child from other children. Let the normal child understand that all are not as fortunate as he. Let the normal child learn to be grateful that by chance it is he who is strong, and let him learn to use his strength for the less fortunate.”
Pearl Buck lived long enough (until 1973) to witness the earliest dawn of integrated classes and deinstutionalization. Had Carol been born two generations later, Pearl Buck would surely have been on the front lines with parents who enrolled their preschoolers in early programs, pushed for mainstreaming in regular classrooms, demanded job training for their adolescents, and full citizenship for their young adults.
Individuals with mental retardation, their families, friends, and advocates, owe a great debt to Pearl Buck for her brave disclosure about Carol in 1950. Perhaps the biggest strides in human advancement are taken in small steps—one person to another. Perhaps racism is broken down in small steps, as three Asian, Afro-American, and white neighbors talk together on one’s front porch. Perhaps homophobia is diminished a bit whenever one gay worker and one straight colleague become friends outside the office. Perhaps men understand women better when a father listens to his daughter describe her experience with sexual harassment. More than all the statistics, charts, and research data, personal stories that tell “the real truth,” as my six-year-old niece says, can move mountains and change lives.
Personal stories. Telling and listening. Pearl Buck excelled in the telling. For those who listen, her story pushes the experience of mental retardation farther along—into a realm of better understanding, compassion, and dedication than had previously existed. And, if I may end on a personal note: I first read The Child Who Never Grew in 1974, shortly after my first child was born with Down syndrome. Although the book was then twenty-four years old and I recognized that some of it was a bit dated, I took great comfort in Pearl Buck’s story. She knew my pain and I knew hers. She also gave me support and hope, as her words will continue to do for other families now and in the future.
1Martha Moraghan Jablow is the author of, Cara, Growing With a Retarded Child (Temple University Press, 1982) and three other non-fiction books.
The Child Who Never Grew
I
I HAVE BEEN A long time making up my mind to write this story. It is a true one, and that makes it hard to tell. Several reasons have helped me to reach the point this morning, after an hour or so of walking through the winter woods, when I have finally resolved that the time has come for the story to be told. Some of the reasons are in the many letters which I have received over the years from parents with a child like mine. They write to ask me what to do. When I answer I can only tell them what I have done. They ask two things of me: first, what they shall do for their children; and, second, how shall they bear the sorrow of having such a child?
The first question I can answer, but the second is difficult indeed, for endurance of inescapable sorrow is something which has to be learned alone. And only to endure is not enough. Endurance can be a harsh and bitter root in one’s life, bearing poisonous and gloomy fruit, destroying other lives. Endurance is only the beginning. There must be acceptance and the knowledge that sorrow fully accepted brings its own gifts. For there is an alchemy in sorrow. It can be transmuted into wisdom, which, if it does not bring joy, can yet bring happiness.
The final reason for setting down this story is that I want my child’s life to be of use in her generation. She is one who has never grown mentally beyond her early childhood, therefore she is forever
a child, although in years she is old enough now to have been married and to have children of her own—my grandchildren who will never be.
The first cry from my heart, when I knew that she would never be anything but a child, was the age-old cry that we all make before inevitable sorrow: “Why must this happen to me?” To this there could be no answer and there was none. When I knew at last that there could never be an answer, my own resolve shaped into the determination to make meaning out of the meaningless, and so provide the answer, though it was of my own making. I resolved that my child, whose natural gifts were obviously unusual, even though they were never to find experience, was not to be wasted. If she could not make the contribution she should have made to her generation through her genius for music, if her healthy body was never to bear fruit, if her strong energies were not to be creatively used, then the very facts of her condition, her existence as it was and is today, must be of use to human beings. In one way, if not the other, her life must count. To know that it was not wasted might assuage what could not be prevented or cured.
This resolve did not come to me immediately. I grew toward it, but once I had reached it I have held to it through all the years of her life. I have let it work in quiet ways, dreading the cold eyes of the curious. Now, today, I will forget those whom I dread, who, after all, are very few. I will remember the many who are kind, who will understand my purpose in telling this story, who will want to help to fulfill this purpose because it is their purpose too.
I am always moved, with grateful wonder, by the goodness of people. For the few who are prying or meanly critical, for the very few who rejoice in the grief of others, there are the thousands who are kind. I have come to believe that the natural human heart is good, and I have observed that this goodness is found in all varieties of people, and that it can and does prevail in spite of other corruptions. This human goodness alone provides hope enough for the world.
The Child Who Never Grew (nonfiction) Page 3