'The Sun Has Burst Through'

Brighter days are ahead for the retarded-but they still need your understanding

By Mrs. Sargent Shriver
Parade Magazine
February 2, 1964

This Wednesday, the nation's attention will be focused on progress in the fight against mental retardation. At a banquet in New York City, attended by President Johnson, the Joseph P. Kennedy International Awards in Mental Retardation will be presented to those who have contributed most in scientific achievement, service and leadership in this field in 1963. Among those honored will be Rep. John Fogarty and Sen. Lister Hill, who have helped guide to passage a federal bill to provide $229 million for research and facilities in retardation and mental illness, signed by President Kennedy just before his death. The need to aid the handicapped is still acute. The following article, by the late President's sister, points up that need.

You may not be a member of the one in three families experiencing the tragedy of mental retardation. But if you are a parent or expect to become one, if you love children, the subject should concern you. Please take 15 minutes to read this article. It may save you years of anguish.

I know. My sister, Rosemary, is retarded. But I cannot help her with pity-or serve with sorrow the 5 million others like her.

Only by facing the facts and resolving to meet the challenge head-on can something be done. Only if we broaden our understanding can we help the mentally retarded to escape into the sunlight of useful living. Even more important, we can prevent millions yet unborn from ever becoming mentally retarded.

First, I want to shatter the notion that the birth of a retarded child implies some kind of social stigma, something to be hidden and ashamed of. Retarded children are born to the healthiest and wealthiest, to the brilliant as well as the meek. They have been born to actors, generals, tycoons, statesmen and Nobel Prize Winners.

200 Different Causes

Second, we need to understand mental retardation for what it really is. It is an affliction, not some witch's curse. It can be traced to over 200 different causes. More people are affected by mental retardation than by blindness, paralytic polio, cerebral palsy and rheumatic heart disease combined. That it takes such an appalling toll can be blamed largely on the stupid and persistent superstitions that have long surrounded the subject.

Even today, many retarded are shut away, child and adult, in squalid institutions to waste their lives, staring blankly at the emptiness around them. In my work with the Joseph P. Kennedy Jr. Foundation, fighting mental retardation by seeking its causes through research, I have seen sights that will haunt me all my life. If I had not seen them myself, I would never have believed that such conditions could exist in modern America, within sight of skyscrapers, suburbia and freeways glittering with cars. I recall institutions in wealthy states where adults and children existed in crowded, bleak, foul-smelling, barrack-like wards, their unwashed clothes and blankets in rags.

If I paint the picture in its darkest hues, it is not to depress you or to arouse your interest through an alarm which will fade in a few days. Rather, it is to plead that most of these broken lives can be mended, if only partially, and with your help.

Third, I want to sound a note of hope. Twenty years ago, when my family was struggling to help Rosemary, we found little but cynical despair. Even 10 years ago not a single university was focusing on mental retardation. Scientists cared little about it, doctors regarded it as hopeless, the public confused it with mental illness. But now the sun has burst through the dismal shroud that for years has shut out the retarded from the rest of humanity. The bright and the talented are now working in the field. Medical, psychological and educational advances have given cause for hope based on reality. Such brain-searing diseases as jaundice, phenylketonuria (PKU), meningitis, measles and maple syrup disease need no longer condemn children to lifelong care in institutions.

PKU, for example, can fortunately be detected by means of a very simple test soon after a baby is born. A change in diet is prescribed, and lifelong retardation is prevented.

Such complete "cures" are exceptional at the present time, but with the help of special education and the right treatment, a dramatic 75 to 85 per cent of the retarded can become useful citizens. Another 10 to 20 per cent can learn to do little jobs which can give enormous satisfaction and pride to their being.

A SALVAGED LIFE

I know this is true. I have seen it. I will never forget the retarded child from the slums, unwanted by his parents and locked out of his home, who collected stray animals and slept with them in a deserted cellar. A wise social worker decided that the boy should have a job working with animals. Today he works in the local animal shelter, accepted and needed for the first time in his life, and is earning $55 a week.

A few months ago, I received a transistor radio put together by a 17-year-old retarded boy. Others like him can be trained to operate the cash registers in supermarkets, to operate deposit and withdrawal tabulators in banks. Retarded people often show skill and steadiness in routine work such as that required in the shoe industry, hat making, even electronics. Instead of becoming bored on a production line, they take delight in showing that they too, can be useful.

Residential schools are also being developed. Recently I visited one, the Southbury Training Center near Waterbury, Conn. There, some 2,000 adults and children live in picturesque cottages on Southbury's 1,540 acres, where they work and play much as they would in the outside world. They run a farm, bakery, cafeteria, shoe repair shop, clothing store, beauty and barber shops. Southbury has a "Main Street" atmosphere. A team of first-rate doctors and psychologists seeks to prepare the pupils for a return to normal life.

Supervised work training groups for the retarded, called shelter-workshops, are achieving minor miracles in therapy and showing excellent profits. One group raised their earnings from $70,000 to $2.5 million in 4 years-proof that supposed tax burdens can become tax bearers.

A study following up 163 mentally retarded with special educational training found 67 per cent employed. Twelve owned their own homes.

All of these advances are taking place around us. And we can also now strike at the causes of retardation. For example, it is becoming increasingly clear that the origin of retardation often lies in pregnancy. Thus prenatal care for mothers-their examination, their diet-assumes vast important. We could cut down significantly the number of retarded babies caused by prematurity if we would apply the knowledge already available to prevent prematurity.

Still the big battle is against deep-rooted prejudice. I ask you with all my heart to believe me when I tell you it simply is not true that the mentally retarded cannot learn, cannot be sociable, cannot be of help to society. They have feelings and emotions, hopes and affections, personal dreams and sufferings. The retarded should not be shunned and ridiculed, treated as outcasts. They should and must be helped. We of the bright, real world must reach out our hands into the shadows, not with the trembling emotion but with sure-footed, level-headed assistance.

Whether you have a retarded child or not, you can help in your own community, through medical prevention, education, job training and recreation programs-and in a hundred other ways.

If you are the mother of a retarded child, you can find a world of comfort and solace in two new inspirational books. They were written by dedicated women who have given their lives to the cause of the retarded: The Challenge of the Retarded Child by Sister Mary Theodore, O.S.F. (Bruce Publishing Company, 1963), and When A Child Is Different, by Dr. Maria Egg (John Day Company, 1963).

WE MUST SHIELD THEM

And Dr. Egg perhaps sums up best the plight of the retarded and their need for help:

"The blind had their Helen Keller. They had many other famous people in their ranks. The deaf had Beethoven and other outstanding personalities. Among the feeble-minded, there is none who, through his achievements, could demonstrate to the public his value and the value of those afflicted like him. It is up to us, then, to uphold the value of these human beings. It is up to us to help extend respect for human dignity to those creatures also. It is up to us who live with them and who love them. For we know what they need and we know what they can give us.

"There is no one among the feeble-minded whose worth is revealed to mankind like a tall, burning flame, licking to high heaven, like those great personalities who overcome their handicaps. Despite all our efforts, the feeble-minded will always remain little flames. These little flames we must shield with our hands-for these little flames radiate warmth and quiet joy; they shine on the road that leads to the wisdom of the heart, to human maturity and to true wealth."

How can you keep mental retardation from striking your family? If it should occur, how can you cope with it? Here is advice to parents from Eunice Kennedy Shriver, based on the accumulated knowledge of experts.

Go to your doctor or clinic as soon as you suspect you are pregnant, insist upon through examinations during your pregnancy.

Make sure a doctor knows you are pregnant before he prescribes any medicine, and don't take a drug that he hasn't prescribed.

Let your doctor or dentist know you're pregnant before you receive X rays.

After your baby is born, if you think he is not developing normally, consult a physician, child psychologist or child welfare agency. (Danger signs: failure to sit up by 9 months, talk by 24 months, use the toilet by 36 months.)

Should you have a mentally handicapped child, don't ignore the condition. Don't excuse him as "going through a stage," scold him for being lazy or underestimate his potential.

Have your physician or public health nurse arrange for the child to be properly evaluated, medically and educationally.

Encourage him to take part in everyday activities. Provide success experiences for him. Set up realistic goals he can reach.

Help the child to help himself (button his shirt, zip his pants, tie shoes, brush teeth, set the table, etc.).

Reward small success; tolerate persistent error or loss of ability to repeat a previous accomplishment.

Don't isolate him from other children. Be proud of him as a member of the family. Give him love, love, love.