VOL. 50, No. 10 HEAD OFFICE: MONTREAL, OCTOBER 1969

Hope for the Mentally Retarded

CHILDREN who are handicapped mentally may be borninto any family whether it be high or low on the socialscale, rich or poor on the economic scale. Mentalretardation plays no favourites. Anyone, and anyone’sneighbour, can have this problem in his family. Thereis no sin, shame or blame attached to it.

Pearl Buck, author of The Good Earth and a dozenother novels, who won the Nobel Prize for her richand truly epic descriptions of peasant life in Chinaand for her biographical masterpieces, revealed to theworld through her book The Child Who Never Grewthat she was the mother of a retarded child. With thisfrank and moving story she raised hope in the heartsof legions of mothers and fathers of retarded childrenthe world over.

To bear a child who is retarded mentally is not, shepointed out, an occasion for guilt feelings. Strippedof its technical terms, retardation is simply this: As aresult of a combination of hundreds of medical,psychological and social factors, many of which arequite obscure, the child’s mental growth is limitedand will not progress to equal the "normal" stature ofpersons at the same age level. The retarded childlearns more slowly than others and is limited in whathe can learn. Simply stated, that is all.

This is not to say that retardation is not a seriousaffliction, but to deny that it is punishment for trans-gression against divine law and therefore something tobe borne resignedly. It is, on the contrary, a challengeto parents and to society to help the afflicted child tomake the most of his life.

The Irish, in their soft-spoken perceptive way, referto the retarded child as "a person requiring specialcare."

Retarded children were once discarded children.They were treated with fear and rejection. Then, underthe influence of education and science, the emphasisprogressed through pity to acceptance and under-standing.

We know today that the vast majority of the retardedcan be successfully integrated into the mainstream ofCanadian life. A great number can in fact progress to

the point of total self-care; many can become semi-dependent, and a substantial number become self-supporting.

Canadians are concerned

That Canadians are deeply concerned about theproblem, and are putting forth great efforts to solveit, does not mean that Canada is unique in the numberof retarded citizens. It does mean that mental retarda-tion is a permanent condition and as such often showsup in an advanced and technical society.

Our society spotlights those who cannot keep upwith the mass, but it also offers hope to them. Webelieve that every child in Canada, no matter what hislimitations may be, is entitled as of right to a chanceto develop in accordance with his capacity. We mustgive him- if we are to live up to our principles-what is needed to enable him to realize his potentialwhatever it may be.

The past twenty years have seen our awakening torealization of our obligations. There has been adramatic increase in research directed toward preven-tion, treatment and care. Parents have banded to-gether in nearly every city and village to providefacilities for application of what is learned. Govern-ments have interested themselves, recognizing that thementally handicapped children are entitled, accordingto their capabilities and needs, to the same privileges,opportunities and protection as other citizens.

At the Federal-Provincial Conference in 1964 aspeaker spelled out society’s responsibility to providethe mentally retarded with: (1) The opportunity forself-fulfilment; (2) The preservation of personaldignity and the protection of rights; (3) The op-portunity to participate and contribute; (4) Theopportunity to attain happiness.

This is a high ideal, but no higher than the situationwarrants. Mental retardation is Canada’s severestcrippler, disabling ten times as many persons asdiabetes, twenty times as many as tuberculosis, andten times as many as polio affected even during thepeak of the scourge. We have an estimated 600,000

mentally retarded children and adults, and two millionpersons in their families are affected. There arenearly a dozen institutions each caring for more thana thousand mentally retarded, and scores of smallerinstitutions.

Who are the retarded ?

Retardation has been measured in terms of in-telligence-quotient, commonly referred to as "I.Q.".In these terms the mildly retarded child is generallydefined within the I.Q. range of 50 to 70; the moder-ately retarded, 35 to 50; the severely retarded, 20 to35, and the profoundly retarded, below 20. Anintelligence-quotient of 90 to 110 is the range ofordinary or "average" minds.

Less than a generation ago many of the experts heldthat intelligence was fixed at birth. The stimulationanimating workers in the field today springs fromliving proof that mental ability can grow whennourished with human warmth and encouragement.

There is abundant evidence that intelligence isstrongly affected by environment. It is this newknowledge, giving expectancy of success in salvagingchildren’s lives, that sparks the present effort all acrossCanada. Parents, schools, churches, professionalpeople, and governments on all levels, are acknowledg-ing their obligation to provide the environment inwhich retarded children can blossom into participatingmembers of society.

Vital in this effort is the early detection of retarda-tion. This involves first of all the parents and thefamily physician, and the primary responsibility in thechild’s early years rests upon the parents. Between theages at which a child finishes his inoculations, aroundeighteen months or two years, and when he goes toschool, there is a gap in medical supervision. Thefigures in any handicapped registry show that thenumber of children that are first diagnosed as beingretarded at six or seven years of age is high.

If a child seems to be lagging in self-help, locomo-tion, eating, or in communication skills, its parentsshould seek the physician’s opinion at once.

The physician’s role at this moment is crucial. Hehas the professional training and skills to medicallyevaluate the child. His alertness may permit identifica-tion of retardation many years before a diagnosismight otherwise be made, thus making possible thebeginning of helpful therapy that would modify orreverse the course of the disorder.

Professional help

The critical feature in detecting retardation isdeviation from the usual development expected ofnormal children. The physician, the public healthnurse, the social worker and the teacher are familiarwith the developmental milestones. They will detectsomething possibly wrong if a child does not, atappropriate ages, sit up or grasp with the hands; walk

and talk; show interest in the immediate surroundings,or follow simple directions.

However well-informed parents may be they cannotrely upon their own knowledge in deciding whether achild is retarded or not. A hasty judgment may harmthe child. He may be suffering from defective hearingor vision, cerebral palsy, communication disorder,emotional disorder, or some chronic illness.

Some children are slow starters, and may catchup on the second lap. You cannot jump to the con-clusion that because a child is performing at half hischronological age today his I.Q. will be fifty in lateryears. Only combinations of medical, psychological,educational and social work personnel should makeappraisal as to the presence of retardation.

Early detection enables parents, with the guidanceof professional people, to help the child to have atleast an equal chance in life with normal children.

The cause of retardation is difficult to determine.About 200 factors have been identified after wideresearch, including genetic accidents, infectious dis-eases, toxic agents, birth injuries, glandular disorders,premature birth, and cultural deprivation.

Dr. Mathilde Krim, a member of the United StatesPresident’s Committee on Mental Retardation, saidin an article this year: "Over fifty per cent of theexisting cases of mental retardation could be preventedif all segments of our population were reached bybasic health services and would know how to applythose relatively simple and well-established preventivemeasures that have become part of the life of the moreaware and affluent among us."

A course to follow

Every person should learn before marriage the factsabout genetic upsets. The genetic material thatdetermines our inherited physical and mental char-acteristics is located in 46 small bodies present in thenucleus of every living cell. These are called chromo-somes. Sometimes something goes wrong in our germcells or during the first cell division, and abnormalitiesarise. Science has not yet found a way to prevent theseoccurrences. The thing to do is to recognize that theycan happen, so as not to be caught unprepared andunqualified to deal with them.

The discovery of retardation in a child is a crisissituation in even the best-informed family. Usuallythere are three major problem areas: the parents’struggle to accept and value this special child; theeffect on other members of the family; and the con-tinuous care of the child and later as an adult.

Feelings of shame or guilt are enemies alike of theparents and the child. These may drive the parentsinto either rejection or over-protectiveness, and bothcan often be more emotionally damaging to the childthan retardation properly dealt with.

Parents can make not only mature acceptance but acourageous and intelligent response to the challenge.

They should look for the best available counsel fromprofessional people who are engaged in research andtreatment. They should adopt a constructive attitude,and learn to live with the situation without unduestress. They will develop ingenuity and resource-fulness in dealing with strange and difficult situations.In this way, with warm love and affectionate care, theyhelp the retarded child to develop positively and leada useful, happy life.

When it is learned that a child is retarded, a well-rounded plan must be made to insure continuous careso that he may achieve his maximum potential. Thisstarts with cuddling and caressing so that the child hasfrom the beginning a feeling of belonging, and theplan progresses through many stages to final pro-vision for guardianship upon the death of the parents.

Teaching the mentally retarded person to becomeself-supporting is not enough. It is also vital to help himto become fully integrated into the mainstream ofsociety. Herein the role of the clergy is most im-portant.

Some churches have special classes that includeretarded children so that they may learn to participatein worship with their families. In some places, com-mittees on religion for the retarded provide materialsand resources that will strengthen religious leaders andcongregations in their task of ministering to theretarded children and their families.

What is being done

There is new hope abroad in Canada. Just a genera-tion ago the retarded were considered to be "hopelesscases", doomed to live out their lives in institutions orat home, in the shadows, with no hope for the future.Until a few years ago there was no public recognitionof the problem; there were no special courses inuniversities; there was very little interest by theofficial health, welfare and educational organizations;the interest of the governments was limited to opera-tion of custodial institutions. This in spite of the factthat as long ago as 1871 the Inspector of Asylums andPrisons for Ontario, J. W. Langmuir, recommendedthat separate training schools be established forretarded children.

Today, governments are contributing millions ofdollars, though this supports only part of the cost ofthe still very limited services which are being pro-vided. Some of the money needed is raised by the325 local branches of the Canadian Association forthe Mentally Retarded through the annual "Flowersof Hope" campaign. About four million dollars wascontributed by the public in the C.A.M.R. "NationalCrusade for the Mentally Retarded" in 1966. Thiswas to help the Association to launch a nation-wideseries of demonstrations and research projects.

The chairman was Donald S. Anderson, Vice-President of the Royal Bank. Deeply impressed bywhat he learned during the campaign, Mr. Andersonsummed up his experience in this way: "In many

respects the National Crusade and the developmentof research and demonstration projects were themost meaningful of all the special events created forCanada’s one hundredth anniversary. The Crusaderepresents an investment in developing a majornational human resource previously untapped- halfa million young Canadians who could becomeproductive, useful citizens if they were given thebenefit of modern science and skills. It was the firsttruly nation-wide attempt to go beyond providingmerely food, shelter and routine maintenance for theretarded. It led us to acknowledge in a tangible waythe right to equal opportunity for this population ofdisadvantaged citizens."

The Canadian Association for the Mentally Re-tarded, formerly called the Canadian Association forRetarded Children, is behind the effort to cope withwhat is at the same time a national and a sadlypersonal problem.

Incorporated in 1958 as a non-profit, non-sectarianand non-political organization, the C.A.M.R. is anational voluntary association which has developedits activity from a scattering of improvised class-roomsin church basements and town halls into a nationalnetwork of training facilities and services involvingmore than 325 local associations and ten provincialdivisions. It guides the work of some 20,000 activemembers and more than 150,000 volunteers. It is anassociate member of the Canadian Medical Associa-tion, which has urged its affiliated associations toengage in total planning for the mentally retarded.

The C.A.M.R. has played an important role inhelping with the establishment of clinics, diagnosticcentres and treatment facilities throughout thecountry. Its branches operate or were instrumental inthe establishment of more than 700 special classes andschools; they direct more than a hundred shelteredworkshops; they set up and administer communitybased residences, summer camps, recreation pro-grammes, pre-school and Sunday school classes,parent guidance and consultant services, seminars andconferences.

Emphasis on action

The C.A.M.R. has organized itself so as to empha-size progressing with every new discovery. Eighty percent of its funds goes into development rather thaninto theoretical research. It has a programme ofdemonstration projects covering every province. Soeffective has been its leadership in pioneering work andin service to the retarded that the C.A.M.R. wasawarded the international Raphael Award by theJoseph P. Kennedy Jr. Foundation.

The focal point of the demonstration projects is theKinsmen National Institute on Mental Retardation.The four hundred Associations of Kinsmen acrossCanada have adopted the Institute as their nationalproject, and have contributed $350,000 to it.

Operating under its own board of directors re-

sponsible to the Canadian Association for the Men-tally Retarded, and the guidance of a cross section ofprofessional advisers, the Institute will be a clearinghouse for all research findings in Canada and abroad.It will study, collate and disseminate meaningfulinformation so that the retarded in all parts of Canadamay benefit immediately.

The C.A.M.R. has from its beginning resisted thetendency revealed in many research efforts: theproneness to have reports end up in filing cabinets. Ifscientific knowledge is the vehicle by which theretarded children may be helped, then effective com-munication must be thought of as the road upon whichthe vehicle moves.

The National Institute will seek to blend the highlytheoretical scientific and professional elements withthe very practical services such as those performed bythe local associations and other community agencies.Once the value of a new technique or theory is dem-onstrated, the Institute will make it available acrossCanada as fast as news travels.

Evidence of the Association’s determination to carrythe message of hope, and to give information toboth lay and professional readers about develop-ments that support that hope, is found in its journal,Mental Retardation (the French-language edition iscalled Dkficience Mentale), the circulation of whichhas grown from a few dozen copies to 13,000. Provin-cial and local "newsletters" reach another 50,000.

Community effort

Following the Second World War a parents’ or"grass-roots" movement began to take form inseveral parts of Canada. Local citizens’ groups weredetermined to do something in this neglected field.They worked with such fervour and effect that theystimulated the interest of public bodies and arousedthe public conscience. They believed that if citizensjoined forces with those already engaged in helpingthe mentally retarded all of the retarded could leadfuller, more productive and happier lives. The Cana-dian Association for the Mentally Retarded is theofficial organ of these lay groups.

The local associations work at community level.They arrange for the operation of special classes in orassociated with the schools; they meet to share theirexperiences and to exchange ideas; they operate daynurseries and pre-school programmes, co-operativebaby-sitting, home visiting, information centres,sheltered workshops and small residences. They havesucceeded in gaining increased acceptance of theretarded in their communities, they have providedvolunteers for many activities, and they have carriedout fund raising drives.

These associations do not put themselves forward asexperts, but they do bring together parents and thosewho can help in a professional way.

Suspected or feared mental retardation in a child isnot a subject for amateur diagnosis or treatment. The

Postage paid in cash at third class rate.Permit No. 10005 in bulk-en hombre.

brain is a too-sensitive instrument to be fiddled withby anyone who does not know his way around amidthe infinite aspects of human behaviour.

The prevention and treatment of mental retardationrequires as much human study and effort as did theachievement of a landing on the moon. All the dis-ciplines are involved: medical, nursing, psychology,social work, education, and speech, occupational andphysical therapy. The C.A.M.R., the Institute, and theprovincial and local associations are co-operating tobring together the thousands of professional workersand those who need their services.

The chiM’s viewpoint

Everyone who hopes to contribute toward in-creasing the life happiness of retarded children mustoccasionally get down on his knees and regard theworld from the child’s viewpoint.

The view from down there is full of frustration andanxiety. The child is very sensitive to his backwardnessand unable to understand his inability to keep up withothers. He is subject to taunting by his companions,and suffers through the misunderstanding of parentsand teachers. Sometimes the eagerness of adults to seehim make progress pushes him beyond his utmostability, and he takes refuge in sullenness.

What he craves is understanding and patient loveand support. These will encourage him to strike out,to try, and to try again.

On our adult level we need to provide for those whofind things not so easy, to discover their resources anddevelop them. We have no magic formula which willincrease intelligence; all we can do is show theretarded child how to make maximum use of hisexisting capacity.

Our task is to concentrate on the improvement ofthose circumstances affecting health, personality,manual skills, living conditions, education, and theother things which may assure the retarded child ahopeful opportunity in the rough and tumble of life.

There is a high ground-swell of interest and excite-ment surging all about those who are giving theireffort and support to this work.

These workers base their effort on these beliefs: theretarded are human beings; they need and respond tolove and affection; they can truly learn; they need theopportunity to express themselves and to be creative;they desperately need companionship.

No one summed up the nation’s obligation andopportunity better than did the late Georges P.Vanier, then Governor General of Canada, in 1965, inhis plea for a rightful place in our society for thementally retarded. Here is what he said:

"I throw out this challenge to all those who believein the value of the human being. There are hundredsof thousands of inadequately cared-for persons whoneed your scientific knowledge, who have need foryour heart, your affection and your love. They havealready been waiting too long."

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