Mental retardation presents itself in
so many forms, degrees, lifestyle, status symbol, and living conditions. It has
many known and unknown causes, with so many questions unanswered. It is
difficult to say clearly: these are the people who are retarded, and this is
what they can do, and this what we can do for them, and this is how we can
eliminate the problem.
To reach into the problem you must know
what it is. To reach the people who have the problems. We must know who they
are, how to understand them and how to help them. Who Are They? Mental
retardation refers to significantly sub-average general intellectual
functioning existing concurrently with deficits in adaptive behavior and
manifested during the developmental period.
Mental Retardation
Behavior Problems
Mental Retardation identifies with
sub-normality in two behavioral dimensions intelligence and social adaptation
occurring before the age of 18. This is a culmination of long debate and
revision and may well be modified in the future. The severely retarded person
has an obvious incapacity to exercise the expected controls of reason and of
personal management necessary for normal living in any human culture.
Left to himself, anyone so impaired
cannot easily survive. The great majority of severely retarded individuals also
have physical characteristics that suggest a central nervous system defect as
the basis of the developmentally retarded behavior. In many cases, no
detectable physical pathology accompanies the deficiency of intelligence and
adaptation. The limited ability to learn, reason and to use "common
sense" is often unexplained.
Can undetected physical pathology be
assumed? Further questions arise when milder degrees of the intellectual and
adaptive deficit are commonly associated with particular families who have
serious social and economic problems. Do poor living conditions produce mental
retardation or is it the reverse?
Or does each condition compound the
other? Still, further, members of certain minority groups tend to be highly
represented among those identified as having intellectual and adaptive
problems, especially in the school-age years.
Is such over-representation of certain
groups a product of racial inferiority or of racial and ethnic discrimination
and disadvantage? For a long time, mental retardation (or its earlier terms
idiocy, feeble mindedness and the like), was thought to have much in
common with insanity, epilepsy, pauperism, and social depravity, all of which
were lumped together. And so, a concept of mental deficiency in terms of social
deviance developed.
Then, as knowledge advanced,
retardation was identified with congenital brain defect or damage and assigned
to heredity. This approach led to redefining mental deficiency in medical terms
as an organic defect producing inadequate behavior.
Mild forms of intellectual
"weakness" became associated with forms of immoral behavior and
social disturbance (the "moral imbecile"), and ascribed to more
subtle defects of inherited character. Legal definitions in terms of social
behavior began to appear.
Mental Retardation IQ
During the 19th and early 20th century
what we now call "mild" retardation was not recognized except as
associated with disturbed or delinquent behavior. There was no simple way of
diagnosing the more mild or incipient forms of mental retardation until the
development of psycho-metrics around 1910. Then the "IQ" rapidly
became a universal means, not only of identifying a mental deficiency but also
of measuring its severity.
In 1910, new techniques in the public
schools discovered there were ten times as many feeble-minded as anyone had
suspected, and promptly coined the term "moron" to cover them! Thus,
a psycho-metric definition of retardation came into being.
The intelligence test measured
behavioral performance on tasks assumed to be characteristic of the growth of
children's ability at successive ages. But it was interpreted as a
measure of capacity for intellectual growth and therefore as a predictor of
future mental status.
It was assumed to represent an inherent
and usually inherited condition of the brain with a fixed developmental
potential. The persistent debate over the nature and composition of
intelligence finally led to an operational definition that it is "whatever
an intelligence test measure".
Since intelligence measurements are
scalar, and degrees on the scale were found to correlate rather well with other
clinical and social evidence of mental proficiency, low IQ became virtually the
sole basis for a diagnosis of mental retardation and for its classification at
levels of severity from "borderline" to "idiot."
This measurement was especially
important in schools, in fact, devised IQ tests became the standard means of
determining school eligibility and classification. Intelligence tests also were
used extensively as sole evidence for determining legal competency and
institutional commitment, as well as the sub-classifications of institutional
populations. But it is rejected a strictly psychometric definition, but it
nevertheless became standard practice in diagnosis and classification.
The siblings and unrelated children had
shown that general intelligence (i.e., measured IQ) is strongly inherited as a
polygenic characteristic. However, following a normal Gaussian curve of
frequency distribution in the general population. A slight negative skew was
attributable to brain damage or genetic mutation. This deviation led to a
theory of mental retardation which divided it into two major groups based on
presumed causation. One group consisted of the more severely deficient type
with brain damage or gross genetic anomaly characterized by various physical
abnormalities and IQ generally of 55 or less.
The other group consisted of the lower
portion of the negative tail on the normal curve of distribution of polygenic
intelligence. This could explain the association of milder forms of low
intelligence with low socio-economic status and its concomitants. In other
words, the less competent tend to sink to the bottom of the social scale in a
competitive society. The issue of cultural bias was raised immediately,
however, with respect to racial and ethnic groups who scored consistently lower
on the standard tests.
Evidence began to accumulate which
generated a variety of additional controversial issues. The constancy of the IQ
was questioned on both statistical and experimental grounds. The pioneering
work had indicated that measured intelligence, as well as other observable
behavior, could be substantially modified by drastic changes in the social
environment of young children.
The quality of the infant's nurture was
found to have enduring effects of intellectual functioning, especially in the
absence of detectable brain pathology. Follow-up studies of persons released
from institutional care and of those who had been identified in school as
retarded showed high rates of social adaptation, up-ward mobility and even
substantial in-creases in measured intelligence in adult years.
Epidemiological studies have
consistently shown a "disappearance" of mildly retarded persons in
the adult years. Explanations for these findings could be offered without
abandoning previous assumptions: Improvement in low IQ scores over several
repetitions simply exemplifies the statistical regression toward the mean,
inherent in errors of measurement: those who improve with stimulation and
environmental change were never "really" retarded, but exhibit
"pseudo-retardation" which masks true capacity.
Eventually, evidence converged to show
that measured intelligence is modifiable within limits, that it is not, in any
case, a measure of fixed capacity, but of the continuity of a developing
intellectual and social competence in which "nature" and
"nurture" are inseparable components and individual "growth
curves" may take a variety of forms and may be influenced by many factors.
A gradual trend developed toward the
definition of mental retardation in functional rather than in structural terms
and not tied either to a specific cause or to unchangeable status. There were
those, however, who continued to find a dual view of retardation more credible
than a single continuum. The measures of intelligence came to be recognized as
primarily predictive of school performance of an academic or abstract nature
requiring language skills, and less predictive of other nonverbal types of
behavior.
Consequently, the need developed to
measure other dimensions of behavior. The combined linguistic with the
non-linguistic performance or quantitative elements and yielded a
"profile" of distinguishable mental traits. Factor analysis of
measures of intellectual behavior had demonstrated that
"intelligence" is not a single trait but a composite of many
distinguishable functions.
The measurement of adaptive behavior
presented even greater difficulty. Such measures were extensively used but had
an only limited validity. The Adaptive Behavior Scale all attempted to measure
the nonintellectual dimensions of developmental adaptation, but they lacked the
precision and reliability of the intelligence measures. Consequently, there has
been a continuing reliance, especially in the schools, on measures of IQ alone
as the criterion for mental retardation.
This practice is a better measure of
adaptive behavior. In the meantime, the issue of cultural bias became an
increasingly serious problem. All measures of either intelligence or of
adaptive behavior reflect social learning, hence tend to be culture-bound.
Their validity, therefore, is dependent on the cultural population on which the
norms have been standardized. No one has succeeded in developing a universally
applicable "culture-free" test of behavior.
Therefore, attempt to devise
"culture-fair" tests which employ comparable but culturally different
elements have as yet failed to yield valid bases of comparison. The extent to
which cultural bias affects the frequency with which members of minority
cultures are labeled "retarded" and assigned to special education
classes. This is especially true when only measures of IQ are used. Social
evaluations of such children show that a high proportion is not significantly
impaired in their adaptation in non-school environments.
This discovery has led to the coining
of the term "Six-Hour Retarded Child," meaning a child who is
"retarded" during the hours in school, but otherwise functions
adequately. Thus, it has called such persons who are identified in one or two
contexts but not in others the "situationally retarded," in contrast
to the "comprehensively retarded," who are identified as such in all
the contexts in which they are evaluated.
Situational retardation occurs by far
most frequently in school settings, and next most frequently in medical
settings, and much less frequently in ratings by families or neighbors or in
settings officially responsible for the comprehensively retarded. The
situational retardate is primarily the product of the labeling process informal
organizations in the community, especially the Public Schools.
The litigation and legislative action,
limiting the use of IQ tests as the sole criterion for labeling and special
class placement, on the ground that such practices systematically penalize
minority groups and violate their rights to equal educational opportunity.
The present tendency is to accept the
formulation which requires both an IQ of less than 70 and substantial failure
on a measure of adaptive behavior. The requirement of the age of onset prior to
18 is more open to question and not always regarded as critical. This was an
extremely important difference because it excluded the "borderline"
category which accounted for about 35% of the school-age population! Mental
retardation, by any of the proposed criteria, occurs with varying degrees of
severity.
Many attempts were made in the past to
classify differences of severity, usually based on social adaptation or
academic learning criteria. Social adaptation criteria distinguished borderline
feeble minded, moron, imbecile, and idiot. Academic Criteria distinguished slow
learner, educable, trainable (with no term suggesting learning capability for
the still lower category). It is proposed using neutral terms to indicate
standard deviation units on the continuum of the IQ and any other scales
employed. This is continued to categorize levels of intellectual functioning.
Also, it identified still another
variable of a significant sociological nature. Most children who rated low on
both IQ and adaptive measures technically "retarded," came from homes
that did not conform to the prevailing cultural pattern of the community
(socio-culturally nonmodal). This group appeared to be identified as retarded
more because of a cultural difference than because of inadequate developmental
adaptation.
Further evidence showed that members of
this group who were identified as retarded children tended more than the
socio-cultural modal group to "disappear" as
identifiable retarded on leaving school. Mental retardation, as an
inclusive concept, is currently defined in behavioral terms involving all
essential components: intellectual functioning, adaptive behavior, and age of
onset. The causes of retardation are irrelevant to the definition, whether they
be organic, genetic, or environmental.
What is indicated is that at a given
time a person is unable to conform to the intellectual and adaptive
expectations which society sets for an individual in relation to his peers. In
this sense, mental retardation reflects social perception aided by a variety of
clinical and nonclinical techniques of identification. Within this broad
functional definition, the deficits indicated in the diagnosis of mental
retardation may or may not be permanent and irreversible.
They may or may not be responsive to
intervention. They may persist only so long as the person remains in a
culturally ambiguous situation, or at the other extreme, they may be of
life-long duration. Or perhaps only their consequences may be ameliorated to a
greater or lesser degree, not the condition itself. Consequently, it is
difficult to estimate how frequently mental retardation occurs and how many
retarded people there are.
Mental Retardation
and Cerebral Palsy
Well, as time passes, the mental
retardation can range from mild to severe. Because learning disabilities
without mental retardation are also related to cerebral palsy. The hearing,
speech, and vision complications (Strabismus) sometimes accompany Cerebral
Palsy. That can make learning difficult and many patients have normal IQs and
no learning disabilities and may have seizure disorders.
How Big is the
Problem?
The incidence of a disorder refers to
the frequency of occurrence within a given period. The purpose of determining
incidence is to yield information as to the magnitude of the problem with a
view to its prevention and to measure the success of preventive programs. The
prevalence of a disorder refers to the number of cases existing at a specified
time in a specified population and is usually expressed as a percentage of that
population or number. Thus, the prevalence of diabetes mellitus in the United
States might be expressed either as the percent or number of the total population
known or estimated to have the disease in a designated year.
The prevalence of people crippled from
poliomyelitis can be expressed as a gradually decreasing figure as the result
of the greatly reduced incidence of the disease following the discovery of the
vaccines. This shows that prevalence is derived from incidence but modified by
the extent to which cases disappear by death, recovery or inaccessibility.
The value of prevalence rates is in
determining the magnitude of the need for care, treatment, protection or other
services. Incidence Mental retardation can be diagnosed only after birth when
appropriate behavioral indices have developed sufficiently for measurement.
During gestation the identification of certain conditions usually or invariably
associated with mental retardation may be detected and potential retardation
inferred.
From the examination of spontaneously
aborted fetuses, it is estimated that probably 30 to 50 percent are
developmentally abnormal and that if they had survived many would have been
mentally deficient; but this information gives us only an incidence of fetal
mortality and morbidity, with an estimate of some types of developmental
deviation, not an incidence of mental retardation itself.
The mortality rates of the potential or
retarded vary with the severity of the defect, which means that many
development-tally impaired infants die before retardation has been, or even can
be, determined. Since mental retardation manifests itself at different ages and
under different conditions, there is no single time e.g., at birth or at one
year of age when it can be determined of every child that he is or ever will be
identified as mentally retarded.
Mildly mentally retarded persons are
most frequently identified, if at all, during school years, and frequently
disappear as recognizably retarded after leaving school. The methods of
identifying retardation are still highly varied; consequently, surveys of
incidence or prevalence are frequently not comparable. The degree of
subnormality employed as a criterion for identification as retarded greatly
affects the count of incidence.
Currently, however, in view of the
problems of arriving at truly meaningful estimates of the incidence of mental
retardation on a global basis, the emphasis for purposes of prevention is
placed on the incidence from specific known causes. Unfortunately, these
comprise only a small proportion of the total identified as retarded. The
earliest success stories in the reduction of the incidence of mental
retardation were in the case of endemic cretinism.
This condition occurred rather
frequently in certain localities, notably some of the Swiss alpine valleys. The
problem was attacked in the second half of the 19th century and the start of
the 20th century. The first step was to identify the condition
with the occurrence of goiter, an enlargement of the thyroid gland. The next
step was to relate this condition to the people's diet and finally to the
absence of trace iodine in the soil and water supply.
Iodine was found to be necessary to the
functioning of the thyroid gland in its production of the hormone thyroxin, the
absence of which can cause cretinism. The addition of iodine to table salt
resulted in reducing mental retardation caused by endemic cretinism to near
zero. It also led to the preventive and therapeutic use of the extract of
thyroxin in the treatment of myxoedema or hypothyroidism from other causes.
An example of incidence is more
problematic, but nevertheless significant. The mild retardation is more
frequently found in families of low socioeconomic status, especially in
families in which the mother is mildly retarded. The retardation in such
families can be reduced by early intervention in providing stimulation to the
child and home assistance to the mother.
This illustrates the values of pursuing
the study of incidence to identifiable causes or correlative conditions as a
means of identifying preventive measures. Prevalence The principal problems of
obtaining reliable prevalence estimates relate to definitions, criteria, and
administrative procedures on the one hand, and to the absence of uniform and
centralized data collection, on the other.
The former problems are gradually
becoming resolved. The latter requires vigorous and sustained efforts to
establish an effective data bank. Prevalence is a product of cumulative
incidence modified by loss. Loss may be the result of death or cure or
unaccounted disappearance. Whereas measures of incidence are important to the
problem of prevention, measures of prevalence are important to the provision of
service resources.
As prevention requires differential
classification by identifiable cause, service provision requires differential
classification by types of need. Overall estimates of the prevalence of mental
retardation have been made by two methods: by empirical surveys and by a
selection of a cut-off point curve for the distribution of intelligence scores.
The mental retardation does not represent a simple portion of the lower tail,
It is far from being normally distributed, varying widely by age, by
socio-economic and ethnic factors.
the diagnosis of mental retardation is
based essentially on an IQ and mental retardation is identified in infancy. The
diagnosis does not change, and d) the mortality of retarded individuals is
similar to that of the general population." The first assumption ignores
the adaptive behavior component; the second holds only for a small portion,
nearly always organically and severely impaired; the third holds only as a generality
for those of IQ below 55, and the fourth holds only for the mildly retarded.
The potential incidence, probably quite
conservative in estimating that infants who survive birth will at some time in
their lives be identified as mentally retarded in some context most probably in
the public schools. The moderate, severe and profound levels or IQ below 50%.
The rate among lower-class nonwhites is higher than among middle-class whites,
but the differences are not so striking as is the case in mild retardation
levels.
Higher rates of prematurity, higher
health risk, and inferior maternal and child health care could account for the
difference at the more severe levels. In any case, the presumption of the
actual prevalence of the severe forms of defect predictive of mental
retardation would be highest at birth, declining rapidly by mortality to a
relatively low rate in adult life. Prevalence rates of the severely retarded
have been affected by several tendencies in the past 20 years. On the one hand,
modern medicine has made enormous strides in its ability to preserve life.
Infant mortality rates have fallen
markedly; survival of premature at progressively younger ages has become
possible, with correspondingly increased risk of developmental damage; recovery
from infectious diseases by use of antibiotics has become commonplace.
Consequently, along with other infants and young children, severely and
profoundly retarded children now have a better chance of prolonged survival.
On the other hand, improved health
care, especially for mothers at risk, immunization, protection from radiation
exposure, improved obstetrics, control of Rh isoimmunization and other measures
have prevented the occurrence of some abnormalities and reduced the
complications which formerly added to the incidence and prevalence of
retardation. New hazards appear, however, in environmental toxic substances,
strains of microorganisms more resistant to antibiotics, new addictive and
nonaddictive drugs, new sources of radiation, environmental stress, all of
which are potential producers of biological damage and mental retardation.
On balance, it is possible that the
incidence of severe retardation is falling while prevalence is continuing to
rise. The high birth rate of the post-World War II period produced a record
number of severely retarded children who are surviving longer than ever before.
The future, envisioning more control of the causes with a lower birth rate more
limited to optimal conditions of reproduction may in time yield lower
prevalence rates of the moderate, severely and profoundly retarded.
The prevalence of mild retardation is
quite a different matter. Where the severely retarded show a declining
prevalence by age, based wholly on mortality, the mildly retarded show a
sharply peaked prevalence in the school years (6-19) and a rapid falling off in
the adult years. This phenomenon cannot be a product of mortality, because the
mildly retarded have shown longevity very nearly that of the general population.
There are two possible alternatives,
both of which may be the case. Large numbers remain retarded but cease to be
the objects of attention, or they, in fact, cease to be retarded. In any case,
no survey has yet found prevalence rates of mild retardation remotely
approaching a constant across ages, such as would be expected on the assumption
of unchanged relative mental status.
The prevalence and social distribution
of mild mental retardation differed markedly according to the definition and
methods of identification employed. The "social system" definition
("mental retardate" is achieved status, and mental retardation is the
role associated with the status with a "clinical" definition (mental
retardation is an individual pathology with characteristic symptoms which can
be identified by standard diagnostic procedures).
Furthermore, when higher criteria for
IQ and adaptive behavior were used, the disadvantage to both Blacks and
Mexican-Americans. The social distribution of mild mental retardation has been
found by all investigators to be inversely related to socioeconomic status. It
is, more prevalent among poor than among middle and upper-income groups and
found most frequently among rural, isolated or ghetto populations.
Controversy persists concerning the
contribution of constitutional and social learning factors to this
distribution, but it is a question of the relative weight rather than an
exclusive alternative. No one doubts the multiple effects of environmental
deprivation on both physical and psychological development. Nor is there much
doubt that social learning enables the great majority of those with mild
intellectual limitations to assume normal social roles in adult life.
It is evident that what might appear to
be a manifestation of the normal distribution of polygenic general intelligence
is really a complex product in which the genetic component is only one among
many factors yielding varying degrees and rates of retarded behavior, among
varying populations at varying ages. There is little point, then, in arguing
who is "really" retarded.
There is a great point in determining
who needs developmental and supportive assistance in achieving a reasonably
adequate adult life, in determining the relationships between identifiable
characteristics and the kinds of services that will be profitable, and in
employing terminology that will aid rather than obscure these relationships.
Mental Retardation
Types
A critical issue is a degree to which
cultural pluralism is reflected in the educational process. The classification
involves a four-dimensional matrix in which potentially handicapping
conditions, including mental retardation defined in either "clinical"
or "social system" terms, maybe identified:
- The
dimension of intellectual functioning, measurable on a continuous scale
represented by IQ. On this scale, an IQ of 69 or less is regarded as
potentially handicap-ping and is one clinically defining characteristic of
mental retardation. The person with only this dimension of disability as
quasi-retarded. Ordinarily, this will be reflected in learning
difficulties in the school setting and justifies individually prescriptive
educational assistance.
- The
dimension of adaptive behavior, measurable on a developmental scale of behavioral
controls accommodating the person to his environment. On this dimension, a
person falling substantially below age norms is regarded as potentially
handicapped. The person who has only this dimension of disability as
behaviorally maladjusted, but she identifies the person with a disability
in both 1) and 2) as clinically mentally retarded, requiring services in
both school and non-school settings.
- The
dimension of physical constitution, describable in terms of the health or
pathology of the various organ systems of the body. While not a defining
characteristic of mental retardation, the physical impairment may be
potentially handicapping and may be the cause of or magnify the
handicapping limitations of 1) and 2). The probability of organic impairments
being present increases with the severity of mental retardation at severe
and profound levels. Individuals characterized by only 3) may be termed
generically as physically impaired and in combination with 1) and 2) as
organic mentally retarded. The term "multiply handicapped" is
commonly used, but this would apply equally to persons with more than one
substantial physical impairment.
- Sociocultural
modality is a fourth dimension that is distinguishable from the other
three. It refers to the extent to which sociocultural variables of family
background conform or do not conform to the modal culture in which the
individual is assessed. When the family background is substantially
nonmodal, in this sense, the individual may be potentially handicapped in
relation to the prevailing cultural expectations because of a lack of
opportunity for the appropriate learning. Such a person may be termed
culturally disadvantaged.
The non-modality yielded effects which,
to the dominant culture, appeared as low IQ, low adaptive behavior, or both
when measured by the norms of the dominant culture. Utilizing a pluralistic
model of mental retardation, sensitive to socio-cultural differences, a
substantial reduction in the prevalence of mental retardation in the
Mexican-Ameri-can as compared to the Anglo population of Riverside.
They need for much more highly refined
procedures in the definition and epidemiology of mental retardation as a basis
for the adequate and appropriate delivery of developmental and supportive
services where they are needed.
There is complete agreement that it is
impossible, at our present state of knowledge, to determine accurately either
the incidence or the prevalence of mental retardation. There is far less
agreement on what we can do to remedy this situation. The two-dimensional
deficit in the level of behavioral performance unquestionably is responsive to
many problems arising from older definitions. But several issues remain.
The two dimensions are not independent,
but are, in fact, highly correlated, the degree of correlation being related to
the severity of deficit, the distinction of intellectual and adaptive measures
have not been sufficiently refined. In practice, more reliance is frequently
placed on IQ measures than on measures of adaptation or other bases of clinical
judgment.
The cultural contamination of
standardized tests used makes their findings suspect. They require a corrective
for the cultural insensitivity of the instruments employed. The use of a global
IQ measure which may be adequate for epidemiological purposes obscures the
complexity of intellectual functioning and the variability of individual
profiles which is the basis of service provision. Global IQ measures are
rapidly losing favor among professional providers of service but are maintained
for administrative convenience and ease of determination.
The differences in the conditions
associated with mild retardation as compared to the more severe forms in terms
of organicity, comprehensiveness of impairment, resistance to modification,
relatedness to cultural norms, etc., that the two types are sufficiently
different as to require separate classification, probably based on organic (or
presumed organic) versus psychosocial etiology.
Since the instruments for the
measurement of intelligence and adaptive behavior are scalar, with a continuous
variation on both sides of central norms, the relationship between a specific
level of deficit and the need for specific types of service and treatment may
be highly artificial. This appears to be the central question underlying the
controversy over the criterion level now excludes persons with IQs from 70 to
85 who formerly were included.
The fact that relatively few scorings
above 69 IQ manifest significant deficits in adaptive behavior may miss the point.
Adaptive behavior may be quite specific and situational, especially where
culture modality may also be in question. The real issue is to determine
individual needs, which cannot be derived from IQ or adaptive behavior.
This issue has been exacerbated by
legislation which re-quires categorical classification as a condition of
eligibility for service. Titles are necessary for any scientific system of
classification and may be useful for certain administrative purposes, but their
use in human service systems is a different matter. The attachment of a label
to a species of plant or a type of rock makes no difference to the plant or the
rock.
The label assigned to classify a human
being does make a difference. To label a person mentally retarded has consequences
of a psychological nature if the person is cognizant of it and can assign a
meaning to it; it has consequences of a social nature insofar as other persons
as-sign meaning and responds in terms of that meaning. This is especially the
case with the label of "mentally retarded" because all terms
associated with deficiency of intelligence are, in our culture, highly charged
with negative values.
There have been many attempts to use
systems of intellect classification as a means of adapting school and other
programs to individual differences without making those differences appear
invidious. These have not been entirely successful because value systems, even
for children, tend to filter through the most subtle of euphemistic
terminology.
This is a difficult issue to resolve.
Success is possible only if a
- a)
classification for epidemiological purposes is entirely separated from
need evaluation for purposes of social grouping and prescriptive
treatment.
- b)
all treatment is person-centered rather than system-centered.
- c)
cultural value systems are recognized and respected.
- d)
eligibility for categorical assistance is based, not on global statistical
criteria, but on the individual's need.
Obviously, the best database for the
epidemiologist would be a computerized data bank including all information on
every case. This has, in effect, been advocated since Samuel Howe's first
attempt to catalog the "idiotic" population of Massachusetts in 1848,
long before modern systems of information storage and retrieval were dreamed
of.
However, rights of privacy and
confidentiality have become a critical issue. The problem is one of reconciling
the needs of the service delivery system and the individual recipient so that
he will neither be "lost" as an anonymous number nor stigmatized for
having his needs recognized.
Negativism
The nature of retardation lends itself
to definition and assessment in the negative terms of the deficit from
desirable norms. The individual person, however, is not made up of deficits but
of asset characteristics, however meager or distorted some of them maybe. All
treatment rests on the positive capacity of the person to respond, whether
physiologically or psychologically.
The issue of negatively versus
positively defined traits and classifications is a basic one between the
purposes of epidemiology and the purposes of service assistance. Who are the
people who are mentally retarded? They are individuals whose assets for
effective living in their cultural and physical environments are insufficient
without assistance.
The screen by which they are brought
into view to be identified and counted is composed of a mesh of intellectual
and adaptive behavior norms. But the screen is a somewhat crude and abrasive
instrument and requires be refining and softening by concern for the
individuals it exposes. How many mentally retarded people are there?
The loss of potential for normal
development and even survival affects a high proportion of those who are
conceived, and those who survive birth. In addition to those hundreds of
thousands who are not well-born, there are millions who are not well-nurtured
by the world in which they live.
How we sort out these millions, how
many will be called "mentally retarded" will depend on our
definitions and our perceptions of need. The roots of these needs are not yet
under control, nor have we sufficiently provided for their engagement.
