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.