Eunice Kennedy Shriver, “Hope for Retarded Children,” Saturday Evening Post 235 (September 22, 1962):71-75.
Complete original source available here.
It was a watershed moment when Eunice Kennedy Shriver, sister of President John F. Kennedy, shared part of her sister Rosemary’s story in this 1962 article. Shriver helped to make mental retardation, as it was called at the time, more culturally visible. The story helped turn the tide away from secrecy and toward openness, an effort that parent organizations, like ARC, had started years earlier. Autism did not figure explicitly in Rosemary’s story, but the theory of psychogenesis that blamed parents for their children’s challenges united the families of children with autism, mental retardation, severe learning disabilities, and other developmental disorders. There is no doubt that Rosemary’s membership in a very public, powerful family—and her sister’s determination to speak out—made developmental disability a higher public policy priority in the United States.
Forty-three years ago this month in Brookline, Massachusetts, my mother and father were looking forward with great anticipation and joy to the birth of their third child…. Rosemary was born September 13 at home—a normal delivery. She was a beautiful child, resembling my mother in physical appearance. But early in life Rosemary was different. She was slower to crawl, slower to walk and speak than her two bright brothers. My mother was told she would catch up later, but she never did.
Rosemary was mentally retarded.
For a long time my family believed that all of us working together could provide my sister with a happy life in our midst. My parents, strong believers in family loyalty, rejected suggestions that Rosemary be sent away to an institution. “What can they do for her that her family can’t do better?” my father would say. “We will keep her at home.” And we did. For years these efforts seemed to work. My parents and the other eight children tried to include Rose in everything we did. At Hyannis Port I would take her as crew in our boat races, and I remember that she usually could do what she was told. She was especially helpful with the jib, and she loved to be in the winning boat. Winning at anything always brought a marvelous smile to her face.
She loved music, and my mother used to play the piano and sing to her. At the dining table Rose was unable to cut her meat, so it was served to her already cut. Later on, in her teens, it was more difficult for her. In social competition she couldn’t keep up. She learned to dance well enough for my brothers to take her along to parties, but it wasn’t easy when Rose would say, “Why don’t other boys ask me to dance?”
Yes, keeping a retarded child at home is difficult. Mother always said the greatest problem was to get other children to play with Rose and to find time to give her all the attention she needed and deserved. Like many retarded persons, Rose loved small children and wanted to be helpful with them. Often I heard her offer her assistance to Mother with a question like, “Can I take the young children rowing, Mother?”
She loved compliments. Every time I would say, “Rose, you have the best teeth and smile in the family,” she would smile for hours. She liked to dress up, wear pretty clothes, have her hair fixed and her fingernails polished. When she was asked out by a friend of the family, she would be thrilled.
When my father became ambassador to England, Rose came to London with us and was presented to the king and queen at Buckingham Palace with Mother, Dad and my sister Kathleen.
Mother was worried about Rosemary in London. Would she accidentally do something dangerous while Mother was occupied with some unavoidable official function? Would she get confused taking a bus and get lost among London’s intricate streets? Would someone attack her? Could she protect herself if she were out of the eye of the governess? No one could watch out for Rose all the time, and she was now a grown-up girl.
In 1941, when we returned to the U.S.A., Rosemary was not making progress but seemed instead to be going backward. At twenty-two, she was becoming increasingly irritable and difficult. She became somber and talked less. Her memory and concentration and her judgment were declining. My mother took Rosemary to psychologists and to dozens of doctors. All of them said her condition would not get better and that she would be far happier in an institution, where competition was far less and where our numerous activities would not endanger her health. It fills me with sadness to think this change might not have been necessary if we knew then what we know today.
My mother found an excellent Catholic institution that specialized in the care of retarded children and adults. Rosemary is there now, living with others of her capacity. She has found peace in a new home where there is no need for “keeping up” or for brooding over why she can’t join in activities as others do. This, coupled with the understanding of the sisters in charge, makes life agreeable for her.
Like diabetes, deafness, polio or any other misfortune, mental retardation can happen in any family. It has happened in the families of the poor and the rich, of governors, senators, Nobel prizewinners, doctors, lawyers, writers, men of genius, presidents of corporations—the President of the United States….
There are, in fact, 126,000 babies born in this country every year who for one reason or another will not achieve an intelligence equal to that of a child of twelve. There are approximately 5,400,000 retarded children and adults in the United States—about 3 percent of our entire population. By 1970, because of the increase in population and the decrease in infant mortality, there will be over 1,000,000 more. Even now, mental retardation afflicts ten times as many people as diabetes, twenty times as many as tuberculosis and more than six hundred times as many as polio.
Chances for Useful Lives
And yet, as I have learned, we are just coming out of the dark ages in our handling or this serious national problem. Even within the last several years, there have been known instances where families have committed retarded infants to institutions before they were a month old—and ran obituaries in the local papers to spread the belief that they were dead. In this era of atom-splitting and wonder drugs and technological advance, it is still widely assumed—even among some medical people—that the future for the mentally retarded is hopeless.
The truth is that 75 to 85 percent of the retarded are capable of becoming useful citizens with the help of special education and rehabilitation. Another 10 to 20 percent can learn to make small contributions, not involving book learning, such as mowing a lawn or washing dishes. Only 5 percent—the most severely retarded cases—must remain completely dependent all their lives. requiring constant supervision.
Furthermore, science is making great strides toward unlocking the causes of retardation. There are more than 200 known diseases or conditions which can result in some degree of mental retardation. Today scientists know how to prevent retardation in many of these cases, and there is every reason to believe we are on the horizon of more exciting new discoveries.
Establishing a Foundation
I remember well one state institution we visited several years ago. There was an overpowering smell of urine from clothes and from the floors. I remember the retarded patients with nothing to do, standing, staring, grotesque—like misshapen statues. I recall other institutions where several thousand adults and children were housed in bleak, overcrowded wards of 100 or more, living out their lives on a dead-end street, unloved, unwanted, some of them strapped in chairs like criminals. In the words of one expert, such unfortunate people are “sitting around in witless circles in medieval prisons.” This is all the more shocking because it is so unnecessary. Yet institutions such as these still exist….
Prejudices of General Public
Unless a person has had intimate contact with the mentally retarded…,the mind’s-eye impressions are likely to be deeply prejudiced. We discovered that anew this Summer when we decided to use our Maryland farm, “Timberlawn,” as a day camp for retarded children in the Washington, D.C., area.
Thirty-four children were referred to us by special schools and clinics in the area. At the same time, we recruited twenty-six high-school and college students—most of them with no prior experience along this line—to work as volunteer counselors during the three weeks of the camp.
What struck us immediately was that the counselors came to us with all the average prejudice and misunderstanding still current among the general public. They had heard, for example, that retarded children were “difficult,” “ unteachable,” “helpless,” “belligerent.”….
Who or what was there to fear? Should anyone be afraid of Wendell, a nine-year old boy with the mental ability of a boy of four? He and Timothy, my own three-year-old son, did many things at our day camp at the same speed and proficiency and loved each other. Both picked up their clothes—with some prodding—after swimming; both caught and threw a ball with the same ability, although Wendell kicked much better than Timothy. Both had the same table manners. Sometimes they would throw the food and would then have to go without dessert. Both ran about the same speed and rushed back and forth. Wendell and Timmy would hold hands and run down the hill together. Wendell would help Timmy climb up the hill when he was tired. Older retarded children are frequently more helpful to younger children than older normal children.
“Won’t They Go Berserk?”
…There are important differences between the mentally retarded and the mentally ill. The vast majority of the mentally retarded are not emotionally disturbed. They do not “go berserk.” They simply lag behind in their intellectual and physical skills, usually from birth. They often strike people as odd in their behavior because the mind of a small child inhabits the body of a much older person….
To our surprise and consternation we found out that most doctors and scientists, like the general public, considered mental retardation a hopeless field for research. Established research scientists saw little connection between their studies and mental retardation. Young researchers wanted to do cancer or heart research and get dramatic results.
…Because of Rosemary, our family has been deeply involved. I have found it interesting to learn that some of the most outstanding accomplishments in this field have been made by persons who also have had a family member afflicted by retardation. The personal involvement often seems to bring an extra measure of dogged determination and faith….
Parents of retarded children have their hands full at home. But these dedicated people have found time to join hands to make a concerted attack on the general problem. Beginning in 1950, they have organized more than a thousand chapters of the National Association for Retarded Children. They have insisted that formerly unconcerned scientists and public officials consider the needs in this field. In addition they established the first diagnostic clinic for the retarded and the first sheltered workshop….
The public and the governments they support are slowly awakening to the needs of the retarded. Yet even today less is being done for them at the community level than for any other afflicted group. Those of us whose families are touched by this tragic condition can help, but broad support is essential to meet retardation squarely and eventually lick it. Interested citizens in any community could take on projects…
Championing the Cause
Twenty years ago, when my sister entered an institution, it was most unusual for anyone to discuss this problem in terms of hope. But the weary fatalism of those days is no longer justified. The years of indifference and neglect are drawing to a close and the years of research and experiment, faithful study and sustained advance are upon us.
To transform promise to reality, the mentally retarded must have champions of their cause, the more so because they are unable to provide their own….