October 1969 — VOL. 50, No. 10 —
Hope for the
Mentally Retarded
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Children who are handicapped mentally
may be born into any family whether it be high or low on the
social scale, rich or poor on the economic scale. Mental retardation
plays no favourites. Anyone, and anyone's neighbour, can have
this problem in his family. There is no sin, shame or blame
attached to it.
Pearl Buck, author of The Good Earth and a dozen
other novels, who won the Nobel Prize for her rich and truly
epic descriptions of peasant life in China and for her biographical
masterpieces, revealed to the world through her book The
Child Who Never Grew that she was the mother of a retarded
child. With this frank and moving story she raised hope in
the hearts of legions of mothers and fathers of retarded children
the world over.
To bear a child who is retarded mentally is not, she pointed
out, an occasion for guilt feelings. Stripped of its technical
terms, retardation is simply this: As a result of a combination
of hundreds of medical, psychological and social factors,
many of which are quite obscure, the child's mental growth
is limited and will not progress to equal the "normal" stature
of persons at the same age level. The retarded child learns
more slowly than others and is limited in what he can learn.
Simply stated, that is all.
This is not to say that retardation is not a serious affliction,
but to deny that it is punishment for transgression against
divine law and therefore something to be borne resignedly.
It is, on the contrary, a challenge to parents and to society
to help the afflicted child to make the most of his life.
The Irish, in their soft-spoken perceptive way, refer to
the retarded child as "a person requiring special care."
Retarded children were once discarded children. They were
treated with fear and rejection. Then, under the influence
of education and science, the emphasis progressed through
pity to acceptance and understanding.
We know today that the vast majority of the retarded can
be successfully integrated into the mainstream of Canadian
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 the problem, and
are putting forth great efforts to solve it, does not mean
that Canada is unique in the number of retarded citizens.
It does mean that mental retardation is a permanent condition
and as such often shows up in an advanced and technical society.
Our society spotlights those who cannot keep up with the
mass, but it also offers hope to them. We believe that every
child in Canada, no matter what his limitations may be, is
entitled as of right to a chance to develop in accordance
with his capacity. We must give him ( if we are to live up
to our principles ( what is needed to enable him to realize
his potential whatever it may be.
The past twenty years have seen our awakening to realization
of our obligations. There has been a dramatic increase in
research directed toward prevention, treatment and care. Parents
have banded together in nearly every city and village to provide
facilities for application of what is learned. Governments
have interested themselves, recognizing that the mentally
handicapped children are entitled, according to their capabilities
and needs, to the same privileges, opportunities and protection
as other citizens.
At the Federal-Provincial Conference in 1964 a speaker spelled
out society's responsibility to provide the mentally retarded
with: (1) The opportunity for self-fulfilment; (2) The preservation
of personal dignity and the protection of rights; (3) The
opportunity to participate and contribute; (4) The opportunity
to attain happiness.
This is a high ideal, but no higher than the situation warrants.
Mental retardation is Canada's severest crippler, disabling
ten times as many persons as diabetes, twenty times as many
as tuberculosis, and ten times as many as polio affected even
during the peak of the scourge. We have an estimated 600,000
mentally retarded children and adults, and two million persons
in their families are affected. There are nearly a dozen institutions
each caring for more than a thousand mentally retarded, and
scores of smaller institutions.
Who are the retarded ?
Retardation has been measured in terms of intelligence-quotient,
commonly referred to as "I.Q.". In these terms the mildly
retarded child is generally defined within the I.Q. range
of 50 to 70; the moderately retarded, 35 to 50; the severely
retarded, 20 to 35, and the profoundly retarded, below 20.
An intelligence-quotient of 90 to 110 is the range of ordinary
or "average" minds.
Less than a generation ago many of the experts held that
intelligence was fixed at birth. The stimulation animating
workers in the field today springs from living proof that
mental ability can grow when nourished with human warmth and
encouragement.
There is abundant evidence that intelligence is strongly
affected by environment. It is this new knowledge, giving
expectancy of success in salvaging children's lives, that
sparks the present effort all across Canada. Parents, schools,
churches, professional people, and governments on all levels,
are acknowledging their obligation to provide the environment
in which retarded children can blossom into participating
members of society.
Vital in this effort is the early detection of retardation.
This involves first of all the parents and the family physician,
and the primary responsibility in the child's early years
rests upon the parents. Between the ages at which a child
finishes his inoculations, around eighteen months or two years,
and when he goes to school, there is a gap in medical supervision.
The figures in any handicapped registry show that the number
of children that are first diagnosed as being retarded at
six or seven years of age is high.
If a child seems to be lagging in self-help, locomotion,
eating, or in communication skills, its parents should seek
the physician's opinion at once.
The physician's role at this moment is crucial. He has the
professional training and skills to medically evaluate the
child. His alertness may permit identification of retardation
many years before a diagnosis might otherwise be made, thus
making possible the beginning of helpful therapy that would
modify or reverse the course of the disorder.
Professional help
The critical feature in detecting retardation is deviation
from the usual development expected of normal children. The
physician, the public health nurse, the social worker and
the teacher are familiar with the developmental milestones.
They will detect something possibly wrong if a child does
not, at appropriate 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 cannot rely upon
their own knowledge in deciding whether a child is retarded
or not. A hasty judgment may harm the child. He may be suffering
from defective hearing or vision, cerebral palsy, communication
disorder, emotional disorder, or some chronic illness.
Some children are slow starters, and may catch up on the
second lap. You cannot jump to the conclusion that because
a child is performing at half his chronological age today
his I.Q. will be fifty in later years. Only combinations of
medical, psychological, educational and social work personnel
should make appraisal as to the presence of retardation.
Early detection enables parents, with the guidance of professional
people, to help the child to have at least an equal chance
in life with normal children.
The cause of retardation is difficult to determine. About
200 factors have been identified after wide research, including
genetic accidents, infectious diseases, toxic agents, birth
injuries, glandular disorders, premature birth, and cultural
deprivation.
Dr. Mathilde Krim, a member of the United States President's
Committee on Mental Retardation, said in an article this year:
"Over fifty per cent of the existing cases of mental retardation
could be prevented if all segments of our population were
reached by basic health services and would know how to apply
those relatively simple and well-established preventive measures
that have become part of the life of the more aware and affluent
among us."
A course to follow
Every person should learn before marriage the facts about
genetic upsets. The genetic material that determines our inherited
physical and mental characteristics is located in 46 small
bodies present in the nucleus of every living cell. These
are called chromosomes. Sometimes something goes wrong in
our germ cells or during the first cell division, and abnormalities
arise. Science has not yet found a way to prevent these occurrences.
The thing to do is to recognize that they can happen, so as
not to be caught unprepared and unqualified to deal with them.
The discovery of retardation in a child is a crisis situation
in even the best-informed family. Usually there are three
major problem areas: the parents' struggle to accept and value
this special child; the effect on other members of the family;
and the continuous care of the child and later as an adult.
Feelings of shame or guilt are enemies alike of the parents
and the child. These may drive the parents into either rejection
or over-protectiveness, and both can often be more emotionally
damaging to the child than retardation properly dealt with.
Parents can make not only mature acceptance but a courageous
and intelligent response to the challenge. They should look
for the best available counsel from professional people who
are engaged in research and treatment. They should adopt a
constructive attitude, and learn to live with the situation
without undue stress. They will develop ingenuity and resourcefulness
in dealing with strange and difficult situations. In this
way, with warm love and affectionate care, they help the retarded
child to develop positively and lead a useful, happy life.
When it is learned that a child is retarded, a well-rounded
plan must be made to insure continuous care so that he may
achieve his maximum potential. This starts with cuddling and
caressing so that the child has from the beginning a feeling
of belonging, and the plan progresses through many stages
to final provision for guardianship upon the death of the
parents.
Teaching the mentally retarded person to become self-supporting
is not enough. It is also vital to help him to become fully
integrated into the mainstream of society. Herein the role
of the clergy is most important.
Some churches have special classes that include retarded
children so that they may learn to participate in worship
with their families. In some places, committees on religion
for the retarded provide materials and resources that will
strengthen religious leaders and congregations in their task
of ministering to the retarded children and their families.
What is being done
There is new hope abroad in Canada. Just a generation ago
the retarded were considered to be "hopeless cases", doomed
to live out their lives in institutions or at home, in the
shadows, with no hope for the future. Until a few years ago
there was no public recognition of the problem; there were
no special courses in universities; there was very little
interest by the official health, welfare and educational organizations;
the interest of the governments was limited to operation of
custodial institutions. This in spite of the fact that as
long ago as 1871 the Inspector of Asylums and Prisons for
Ontario, J. W. Langmuir, recommended that separate training
schools be established for retarded children.
Today, governments are contributing millions of dollars,
though this supports only part of the cost of the still very
limited services which are being provided. Some of the money
needed is raised by the 325 local branches of the Canadian
Association for the Mentally Retarded through the annual "Flowers
of Hope" campaign. About four million dollars was contributed
by the public in the C.A.M.R. "National Crusade for the Mentally
Retarded" in 1966. This was to help the Association to launch
a nation-wide series of demonstrations and research projects.
The chairman was Donald S. Anderson, Vice-President of the
Royal Bank. Deeply impressed by what he learned during the
campaign, Mr. Anderson summed up his experience in this way:
"In many respects the National Crusade and the development
of research and demonstration projects were the most meaningful
of all the special events created for Canada's one hundredth
anniversary. The Crusade represents an investment in developing
a major national human resource previously untapped ( half
a million young Canadians who could become productive, useful
citizens if they were given the benefit of modern science
and skills. It was the first truly nation-wide attempt to
go beyond providing merely food, shelter and routine maintenance
for the retarded. It led us to acknowledge in a tangible way
the right to equal opportunity for this population of disadvantaged
citizens."
The Canadian Association for the Mentally Retarded, formerly
called the Canadian Association for Retarded Children, is
behind the effort to cope with what is at the same time a
national and a sadly personal problem.
Incorporated in 1958 as a non-profit, non-sectarian and
non-political organization, the C.A.M.R. is a national voluntary
association which has developed its activity from a scattering
of improvised class-rooms in church basements and town halls
into a national network of training facilities and services
involving more than 325 local associations and ten provincial
divisions. It guides the work of some 20,000 active members
and more than 150,000 volunteers. It is an associate member
of the Canadian Medical Association, which has urged its affiliated
associations to engage in total planning for the mentally
retarded.
The C.A.M.R. has played an important role in helping with
the establishment of clinics, diagnostic centres and treatment
facilities throughout the country. Its branches operate or
were instrumental in the establishment of more than 700 special
classes and schools; they direct more than a hundred sheltered
workshops; they set up and administer community based residences,
summer camps, recreation programmes, pre-school and Sunday
school classes, parent guidance and consultant services, seminars
and conferences.
Emphasis on action
The C.A.M.R. has organized itself so as to emphasize progressing
with every new discovery. Eighty per cent of its funds goes
into development rather than into theoretical research. It
has a programme of demonstration projects covering every province.
So effective has been its leadership in pioneering work and
in service to the retarded that the C.A.M.R. was awarded the
international Raphael Award by the Joseph P. Kennedy Jr. Foundation.
The focal point of the demonstration projects is the Kinsmen
National Institute on Mental Retardation. The four hundred
Associations of Kinsmen across Canada have adopted the Institute
as their national project, and have contributed $350,000 to
it.
Operating under its own board of directors responsible to
the Canadian Association for the Mentally Retarded, and the
guidance of a cross section of professional advisers, the
Institute will be a clearing house for all research findings
in Canada and abroad. It will study, collate and disseminate
meaningful information so that the retarded in all parts of
Canada may benefit immediately.
The C.A.M.R. has from its beginning resisted the tendency
revealed in many research efforts: the proneness to have reports
end up in filing cabinets. If scientific knowledge is the
vehicle by which the retarded children may be helped, then
effective communication must be thought of as the road upon
which the vehicle moves.
The National Institute will seek to blend the highly theoretical
scientific and professional elements with the very practical
services such as those performed by the local associations
and other community agencies. Once the value of a new technique
or theory is demonstrated, the Institute will make it available
across Canada as fast as news travels.
Evidence of the Association's determination to carry the
message of hope, and to give information to both lay and professional
readers about developments that support that hope, is found
in its journal, Mental Retardation (the French-language
edition is called Déficience Mentale), the circulation
of which has grown from a few dozen copies to 13,000. Provincial
and local "newsletters" reach another 50,000.
Community effort
Following the Second World War a parents' or "grass-roots"
movement began to take form in several parts of Canada. Local
citizens' groups were determined to do something in this neglected
field. They worked with such fervour and effect that they
stimulated the interest of public bodies and aroused the public
conscience. They believed that if citizens joined forces with
those already engaged in helping the mentally retarded all
of the retarded could lead fuller, more productive and happier
lives. The Canadian Association for the Mentally Retarded
is the official organ of these lay groups.
The local associations work at community level. They arrange
for the operation of special classes in or associated with
the schools; they meet to share their experiences and to exchange
ideas; they operate day nurseries and pre-school programmes,
co-operative baby-sitting, home visiting, information centres,
sheltered workshops and small residences. They have succeeded
in gaining increased acceptance of the retarded in their communities,
they have provided volunteers for many activities, and they
have carried out fund raising drives.
These associations do not put themselves forward as experts,
but they do bring together parents and those who can help
in a professional way.
Suspected or feared mental retardation in a child is not
a subject for amateur diagnosis or treatment. The brain is
a too-sensitive instrument to be fiddled with by anyone who
does not know his way around amid the infinite aspects of
human behaviour.
The prevention and treatment of mental retardation requires
as much human study and effort as did the achievement of a
landing on the moon. All the disciplines are involved: medical,
nursing, psychology, social work, education, and speech, occupational
and physical therapy. The C.A.M.R., the Institute, and the
provincial and local associations are co-operating to bring
together the thousands of professional workers and those who
need their services.
The child's viewpoint
Everyone who hopes to contribute toward increasing the life
happiness of retarded children must occasionally get down
on his knees and regard the world from the child's viewpoint.
The view from down there is full of frustration and anxiety.
The child is very sensitive to his backwardness and unable
to understand his inability to keep up with others. He is
subject to taunting by his companions, and suffers through
the misunderstanding of parents and teachers. Sometimes the
eagerness of adults to see him make progress pushes him beyond
his utmost ability, and he takes refuge in sullenness.
What he craves is understanding and patient love and support.
These will encourage him to strike out, to try, and to try
again.
On our adult level we need to provide for those who find
things not so easy, to discover their resources and develop
them. We have no magic formula which will increase intelligence;
all we can do is show the retarded child how to make maximum
use of his existing capacity.
Our task is to concentrate on the improvement of those circumstances
affecting health, personality, manual skills, living conditions,
education, and the other things which may assure the retarded
child a hopeful opportunity in the rough and tumble of life.
There is a high ground-swell of interest and excitement
surging all about those who are giving their effort and support
to this work.
These workers base their effort on these beliefs: the retarded
are human beings; they need and respond to love and affection;
they can truly learn; they need the opportunity to express
themselves and to be creative; they desperately need companionship.
No one summed up the nation's obligation and opportunity
better than did the late Georges P. Vanier, then Governor
General of Canada, in 1965, in his plea for a rightful place
in our society for the mentally retarded. Here is what he
said:
"I throw out this challenge to all those who believe in
the value of the human being. There are hundreds of thousands
of inadequately cared-for persons who need your scientific
knowledge, who have need for your heart, your affection and
your love. They have already been waiting too long."
Published by RBC Financial Group. All editions from the RBC
Letter collection are available on our web site at www.rbc.com/responsibility/letter.
Our e-mail address is: rbcletter@rbc.com.
Publié aussi en francais.
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