71

At a day camp on her Maryland estate, eUII;('l' Shril'er e1ljoysa spirited ride with gleeflll retarded childrell.

How the Kenned) family's own misfol,tune spul'l'cd Ihe fighl againsl a \\ idel,\ misundel'stood affliction, Hope For Retarded Children

B)' EUN ICE KENNEDY SIIBIVEB

V orty·three years ago this month in My parents and the other eight children teeth and smile in the family," she would • ., Brookline, Massachusetts, my mother tried to include Rose in everything wedid. smile for hours. She liked to dress up, and father were looking l"orward with AI Hyannis Port J would take her as crew \,\,-ear pretty clothes, have her hair fixed great anticipation and joy to the birth of in our boat races, and I remember that and her fingernails polished. When she their third child. My oldest brother, Joe, she usually could do what she was lold. was asked out by a friend of the family, was four years old. bright, strong. aggres­ She was especially helpful with the jib, she would be thrilled. sive, with dark eyes, a fine smile. Jack. and she loved 10 be in the winning boat. When my father became ambassador quick, slender. independent--even at Winning 3t anything always brought a to England, Rose came to London with three he was interested in everything and marvelous smile to her face. us and was presented to the kina and adored by everyone. My fa ther was thiny She loved music, and my mother used queen at Buckingham Palace with Mother, and my mother was (wenty-eigh!. They 10 play the piano and sing to her. At the Dad and my sister Kathleen. lo\'ed children and would be happy to dining table Rose was unable to cut her Mother was worried about Rosemary in have al1that God ",ould send them. meat, so it was served to her already cut. London. Would she accidentally do some­ Rosemary was born September thir­ Later on, in her teens, it was more dif­ thing dangerous while Mother was occu­ teenth at home-a normal delivery. She ficult for her. In social competition she pied with some unavoidable official func· was a beautiful child, resembling my couldn't keep up. She learned to dance tion? Would she get confused taking a mother in physical appearance. But earl y well enough for my brothers to take her bus and get lost among London's intri· in life Rosemary was differen!. She was along to parties, but it wasn't easy ",hen cate streets? Would someone attack her? slower to crawl, slower to walk and speak Rose would say. "Why don't other boys Could she prOtect herself if she were out than her two bright brothers. My mother ask me to dance?"' of the eye of the governess? No one could WllS told she would catch up later, but she Yes. keeping a retarded child at home watch out for Rose all the lime, and she never did. is difficull. Mother always said the great­ was now a grown-up girl. Rosemary was mentally retarded. est problem Was to get other children to In 1941, when weretumed to the U.S.A., For a long time my family believed play with Rose and to find time to give Rosemary was not making proaress but that al1 of us working together could pro­ her all the attention she needed and seemed instead to be going backward. At vide my sister with a happy life in our deserved. Like many retarded persons, tv.-enty-two she was becoming increas­ midst. My parents, strong believers in Rose lo\ed small children and wanted to ingly irTitable and difficult. She became family loyalty, rejected suggestions that be helpful with them. Often I heard her somber and talked less. Her memory and Rosemary be sent away to an institution. offer her assistance to Mother with a ques­ concentration and her judgment were de· "What can they do for her that her fam­ tion like, "Can I take the young children dining. My mother took Rosemary to psy­ ilycan't do better?"" my father would say. rowing, Mother?"' chologists and to dozens of doctors. All "We wi11 keep her at home." And we did. She loved compliments, Every time I of them said her condition would not get For years these efforts seemed to work. would say. "Rose, you have the best better and that she would be far happier 72

"llosellla!'Y was different. .My mol hel' \\ as laid she would ealeh up, but she never did."

in an institution. where competition was Furthermore, science is making great hard at work cleaning up the yard. In far less and 'Where our numerous activi­ strides toward unlocking the causes of many institutions he would have been lies would not endanger her health. It fills retardation. There are more than 200 sitting uselessly, permitted to do nothing. me with sadness to think this change known diseases or conditions which can or even strapped in a chair. Thechildren, might not have been necessary jfwe knew result in some degree of mental retarda­ we learned, had helped to build the train, then what we know today. tion. Today scientists know how to pre­ and the school swimming p001. Adults go My mother found an excellent Catho­ vent retardation in many of these cases, into neighboring communities on Satur­ lic instilUlion that specialized in the care and there is every reason to believe we are day to cut lawns and do other household of retarded children and adults. Rose­ on the horizon of more exciting new chores before returning to Southbury mary is there now. living with others of discO\'Cries. with some spending money. her capacity. She has found peace in a Southbury is a community for the re­ new home where there is no need for Establis hing n Foundution tarded, rather than an institution. Its IS40 "keeping up." or for brooding over why acres contain many of the clements of she can't join in activities as others do. In 1946 my father established the everyday life--a farm, a bakery, a shoe­ This, coupled with the understanding of Joseph P. Kennerly Jr. Foundation as a repair shop, beauty shops, barbershOps, a the sisters in charge, makes life agreeable memorial to my oldest brother, who was clothing store and a cafeteria, most of for her. killed in the war. Not a single private them arranged on a typical small-town Like diabetes. deafness, polio or any foundation was then devoting its money "Main Street:' For the most part they other misfortune. mental retardation can to mental retardation, so we dedicated are manned by the retarded. The em­ happen in any family. It has happened in our etTorts, and roughly 51 ,000,000 a year phasis is on rehabilitation ralher than in­ the families of the poor and the rich, of in grants and awards, to this cause. In re­ definite confinement. A team of first-rate governors. senators, Nobel prizewinners, cent years my husband, Sargent Shriver, psychologists and medical doctors does doctors. lawyers, writers, men of genius, and I have become increasingly active in all it can to prepare residents for a return presidents of corporations-the Presi­ the foundation as other interests began to to the outside world. Rosemary (right) 1I';lh Eunice dent of the United States. occupy my father's time. My brother Ted There are 2000 "residents" of the pic­ and Jack (11'0 years be/ore she A son of Stanley High, the latc editor took over as foundation president. Our turesque cottages at Southbury, which is was placed in an instilution. of the Reader's Digest, is in a training work has given us a close acquaintance one of the five or six best state inslalla­ school for Ihe retarded. Nobel prizewin­ with the problem and how it is being tions we have ever loured. Even though it ning novelist Pearl Buck. in a small vol­ handled, and with some of the mentally has expanded greatly since it was founded ume called Tht! Child Who Nel'u Grew, retarded themselves. I also served re­ in 1940, Southbury is far from able to has writlen a moving account of her cently as a consultant to the President's meet the demand for admission. We efforts to find a good life for her mentally Panel on Mental Retardation. which was learned that one parent-a U.S. Army retarded daughter. Roy Rogers's wife. commissioned to recommend a national colonel- arranged to be trnnsferred from Dale Evans, has written about their men­ program 10 deal with the problem. his California base to Connecticut when tally retarded child. I remember well one state institution he learned about Southbury. Five years There are, in fact, 126,000 babies born we visited several years ago. There was an from the day he began his efforts, he suc­ in this country every year who for one overpowering smell of urine from clothes ceeded in gaining admission for his son. reason or anothcr wi ll not achieve an in­ and from the floors. I remember the re­ Happily, there is a growing number of telligence equal to that of a child of tarded patients with nothing to do, stand­ outstanding facilities. although the supply twelve. There are approximately S,400.- ing. staring, grotesque-like misshapen still falls far short of the need. 000 retarded children and adults in the statues. I recall other institutions where United States-about 3 percent of our several thousand adults and children were Pt't'judi<..'cs 01' CCIICI'1I1 Public entire population. By 1970, because of the housed in bleak, overcrowded wards of increase in population and the decrease in 100 or more, living out their lives on a Unless a person has had intimate con­ infant mortality. there will be over 1,000,- dead-end street, unloved, unwanted, some tact with the mentally retarded or has 000 more. Even now, mental retardation of them strapped in chairs like criminals. seen thcm under such conditions as those afflicts ten times as many people as In the words of one expert, such unfor­ at Southbury, the mind's-eye impressions diabetes, twenty times as many as tuber­ tunate people are "sitting around in wit­ are likely to be deeply prejudiced. We dis­ cu losis and more than six hundred times less circles in medieval prisons." This is covered that anew this Summer when we as many as polio. aJl the more shocking because: it is so un­ decided to use our Maryland farm, "Tim­ necessary. Yet institutions such as these berlawn," as a day camp for retarded Chanccs for U~ful Lives still exisl. children in the Washington, D.C., area. One sun-drenched morning this sum­ Thiny-four children "''Cre referred to us And yet. as I have learned. we are just mer my husband and I visited acompletely by special schools and clinics in the area. coming out of the dark: ages in our han­ ditTerent sort of center-the Southbury At the same time, we recruited twenty-six dling or this serious national problem. Training School near Waterbury. Con­ high-school and college students-most Even within the last several years, there necticut. As we arrived, a fishing contest of them with no prior experience along have been known instances where families was taking place around a pond. In an­ this line-to work as volunteer counselors have committed retarded infants to insti­ other area a group of girls sat k:nitting. during the tlirec weeks of the camp. tutions before they were a month old­ Nearby another group sat crOSS-leased, What struck us immediately was that and ran obituaries in the local papers to engaged in a spirited community sing. A the counselors came to us with all the av­ spread the belief th:it they were dead. In wooden "Toonerville" train plied the erage prejudice and misunderstanding this era of atom-splitting and wonder grounds, fiUed with laughing children. A slill current among the general public. drugs and technological advance, it is still coachman in red silk livery conducted They had heard, for example, that re­ widely assumed-even among some med­ pairs of children around green meadows tarded children were "difficult," "un­ ical people-that the future for the men­ in a burro-drawn cart. teachab'e," ·'helpless." "belligerent." tally retarded is hopeless. Every person in this scene, old and Ann Hammersbacher, an eighteen-ycar­ The truth is that 7S to 8S percent of the young, was mentally retarded. The teen­ old high-school graduate who came to retarded are capable of becoming useful ager leading the group in songs was re­ work at the camp with her twin sister, cilizens with the help of special education tarded. So were the children in the train, Mary, told me afterward, "We had no and rehabilitation. Another 10 to 20 per­ the passengers in the burro cart and their idea what it would be like. We'd never cent can learn to make small contribu­ liveried coachman. met any retarded children. None of us tions, not involving book learning, such as Here for once, at Southbury, the men­ really had any experience. To tell the mowing a lawn or washing dishes. Only 5 tally retarded were participatingas human truth, all of us were a little afraid." percent-the most severely retarded cases­ beings, with all the privileges of work and Who or what was there to rear ? Should must remain completely d~pendent all play that the nonretarded enjoy. We saw anyone be afraid of Wendell, a nine-year­ their lives. requiring constant supervision. a thirty-year-old man, with an 10 of 2S, old boy with the mental ability ofa boy of four? He and TimOlhy, 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 beller than Timothy. Both had the same table manners. Sometimes they would throw the food and would then have to go wi thout dessert. Both ran about the same speed and rushed back and forth. Wendell and Timmy would hold hands and run down the hill to­ gether. Wendell wou ld help Timmy climb up the hill when he was tired. Older re­ tarded children are frequently more help­ fulto younger children Ihan older normal children.

Oisco\'cring l...oIltc nt T"lcnh. Two things at the camp especially im­ pressed the counselors. First, the re­ tarded children wert manageable with the right approoch. The counselors, like others who have wo rked with the re­ tarded, learned that the child with the lower 10 is often friendlier than the brighter child, not as demanding or self­ centered, and that he often responds to affection as a bee to honey. Second, the counselors discovered that the retarded child may be capable of demonstrating unsuspected skills: that Veronica, for in­ stance, could paint an appealing likeness of the President and his family standing in front of the White House; that a boy who couldn't read or write was the best natural athlete in the camp. The same aSSCtS of stability and unsus­ pected talent have made possible impor­ tant breakthroughs in the employment of mentally retarded persons. There is no excuse for these people having 10 live neglected lives in the dark garrels and medieval institutions which are hangovers from yesteryear. AI the Wyoming Valley Workshop in Wi lkes-Barre, Pennsylvania, there is a slightly built girl oft ..... enty who had never been out of her house or spoken to any­ one except her parents until just two years ago. In her first month at the workshop she was "terrified if anyone so much as looked at her," according 10 director Walter H. George. Now she is the fastest producer of silk bows-for ladies' pumps-on the workshop assembly line. A teen-ager al the same center, which is one of a number of sheltered workshops in the United Stales today, wasn't quite satisfied with the accuracy of a compli­ cated metal jig developed by a shoe com­ pany al a cost of S300. He look a block of wood, two finishing nails and a dozen eyelets purchased from the len-cc:nt store and designed his own version of the jig at a cost of twenty-four cents. The new jig is more accurate than its predecessor. 11 is used by the workshop in producing ornaments for Wilkes-Barre shoe manu­ facturers. In Tampa, Aorida, J. Oifford Mac­ Donald, the parent of a retarded child, saw lhe need for job opportunities (or the mentally handicapped there. Working Eunice counsels Wendell, a nine-year--old with the mind ofa child offour, during a lull at Sh,iwtr day camp. 74

"Hel'e for oncc, at SouthbLII'y, the mentally re­ larded were participating as human beings."

with the United Fund. the MacDonald odd in their behavior because the mind A few months ago Doctor Cooke was full use of the local prenatal clinics...... or Workshop is among the best in the coun­ of a small child inhabits the body of a interviewing the mother of a severely establish them if Ihey do nOI now c:New York's suburban Long of this condition. But by 1956 it became Parents of retarded children have their for the retarded. As we discovered at our Island, mentally retarded workers are apparent that no matter what we were hands full at home. But these dedicated summer day camp, the children can using their skills in the highly competitive doing for the retarded, the fundamental people have found time to join hands to swim, play ball, paint, ride and use many electronics industry. This started earlier problems of the field were still there. make a concerted attack on the general other skiHs. II is startling that there are this year after Mr. Hank Viscardi, head Despite all private and public efforts, the problem. Beginning in 1950, they have no special recreation programs for the of Long Island's renowned Abilities, In­ children kept coming and coming, and organized more than a thousand chapters retarded in 99 percent of American com­ corporated, attended a meeting of the there wasn't room for everyone. So we of the National Association for Retarded munities. President's Panel on Mental Retardation. decided to concentrate on research to Children. They have insisted that for­ • Junior Chambers of Commerce or Mr. Viscardi, who was legless at birth, meet the problem at its source. merly unconcerned scientists and public other business groups could start shel­ employs 400 physically handicapped officials consider the needs in this field. tered workshops for the retarded. Some workers. Auru<.... iJlg Rescnrchers In addition they established the first 2500 retarded persons were helped by "I wonder," he said to me, "if we diagnostic clinic for the retarded and the vocational training last year, but this could use similar training techniques To our surprise and consternation we first sheltered workshop. does not even meet the needs of the State with the retarded." Enthusiastically. I found out that most doctors and scien­ Sometimes the persistence of an indi­ of Wisconsin. Write the National Asso­ encouraged him to try; he picked the tists, like the general public, considered vidual parent is the instrument which ciation for Retarded Children, 386 Park growing electronics field as a starter. mental retardation a hopeless field for breaks important new ground. The Nor­ Avenue South, New York 16, New York, The International Business Machines research. Established research scientists wegian mother of two severely retardcd for full information. Corporation and McDonnell Aircraft saw little connection between their children trooped from doctor to doctor Corporation provided some contract studies and mental retardation. Young with the story that her children's diapers Championing the Cnusc work and training help, without which researchers wanted to do cancer or heart ·'smelled different." She was scoffed at, the program could not have been begun. research and get dramatic results, One doctor even suggested she consult a Twenty years ago. when my sister en­ Last spring about twenty retarded people We decided to bring the mountain to psychiatrist for her own sake. tered an institution, it was most unusual started training at company headquarters Mohammed by endowing or building re­ But she was right. Her children's re­ for anyone to discuss this problem in on Long Island. Their average age is search laboratories in places where "our" tardation was caused by phenylketonuria, terms of hope. But the weary fatalism of about eighteen, but their academic problem could lIot be hidden from the or PKU. a disorder which brings an cx· those days is no longer justified. The achievement in basic subjects is between Nobel prizewinners, the young research­ cess of a certain acid to the system. The years of indifference and neglect are the second and fourth grades. Few had ers or any other men with ideas. Kennedy acid gives a distinct odor to the urine. drawing to a close and the years of re­ much experience in the outside world. Laboratories were established at Massa­ Not until one doctor finally took the search and experiment. faithful study At Abilities' electronics plant they chusetts General Hospital, Johns Hop­ trouble to investigate this mother's im­ and sustained advance are upon us. learned such skills as cable lacing, wire kins, Wisconsin and Stanford, where men probable ··evidence" was Ihe nature of To transform promise to reality, the preparation and soldering, and the as­ such as Dr. Joshua Lederburg, Nobel PK U discovered. Today it can be de­ mentally retarded must have champions sembly of transistor radios. Recently I prizewinner in genetics, are now active tected by simple tests, and cured before of their cause, the more so because they was pleased to receive as a gift a radio in the program, it damages a child. are unable to provide their own. Dr. put together in a few weeks by a retarded Because of Rosemary, our family has Maria Egg. a German psychologist, has seventeen-year-old boy who had been been deeply involved. I have found it in­ Helicf From lI yd~pha l lls expressed this as movingly as anyone I functioning at the fourth-grade level in teresting to learn that some of the most know in this passage from Ein Killd lSI school when he came to Abilities. Now outstanding accomplishments in this A Bridgeport, Pennsylvania. engineer AI/ders ('·A Child is Different"): he is one of the stars of the training field have been made by persons who named John Holter discovered doctors program. also have had a family member afflicted could not successfully relieve his baby The blind had their Helen Keller; they had by retardation. The personal involve­ of dread hydrocephalus-water on the many other famous people in their ranks; " \\'ol1' l They Go Bt·rserk?" ment often seems to bring an extra meas­ brain-because they lacked a workable the deaf had Beethoven and other outstand· ure of dogged determination and faith. drain to siphon off this fluid. The de· ing personalities. Among the feebleminded, Despite such successes, employment The Johns Hopkins research effort, for termined parent managed to devise such there is none who. through his achievements, for the retarded is still in its infancy. One example, is led by Dr. Robert Cooke, a a tiny valve for use on his son. Today it could demonstrate to the public his value and difficulty is ingrained pubJjc prejudice brilliant silver-haired physician who is has helped more than 16,000 children thevalueofthoseaffiictedlikehim.ltisupto us, then, to uphold the value of these human which is so damaging to these people. chairman of the Dep'artment of Pediatrics. stricken by this important cause of re­ beings. It is up to us to help elltend respect Mort Frankston, director of a work· He is the father of two retarded daughters tardation. for human dignity to those creatures also; it training center for the retarded in Phila­ who live at home with their three normal The public and the governments they is up to us who live with them and who love delphia, points up the problem. " I still brothers and sisters. support are slowly awakening to the them. For we know what they need and we have friends," he says, "who ask me, Until recently most medical schools needs of the retarded. Yet even today know what they can give us. 'Aren't you afraid to work around re­ had no instruction in mental retardation, less is being done for them at the com­ There is nOI one among the feebleminded tarded people? Won't they go berserkT" But Doctor Cooke has instituted at munity level than for any other afflicted whose worth is ren~aled to mankind like a This is a misconception which we may Johns Hopkins the first formal course on group, Those of us whose families are tall, burning flame, licking to high heaven. as well clear up right now. There are im­ this subject at a U. S, medical school, touched by this tragic condition can like those great personalities who overcome portant differences between the mentally with the help of five outstanding young fielp, but broad support is essential to their handicaps. Despite all our efforts, the feebleminded will always remain little flames. retarded and the mentally ill. The vast scientists who have recently decided to meet retardation squarely and eventually These [illie flames we must shield with our majority of the mentally retarded are not concentrate in this field. This year 150 lick it, Interested citizens in any com­ hands.. . For these little flames radiate emotionally disturbed, They do not "go students, interns and residents took this munity could take on projects such as warmth and soothing quiet joy; they shine berserk." They simply lag behind in their advanced Johns Hopkins instruction be­ these: on the road that leads to the wisdom of the intellectual and physical skills, usually fore fanning out over the country to put • Women's clubs or service~lub auxil­ heart, to human maturity, and to true wealth. from birth. They often strike people as it to use. iaries could help expectant mothers make THE END At Connecticut'3 Southbury Training School, retordedyoUIJlsler.J romp in a pool thq helped buJldpreparingfor us,ful Ji.',soutside.