I 69
SCREENING AND PREVENTION OF HIGH-GRADE MENTAL RETARDATIONTO WHAT PURPOSE? UNDER WHAT CIRCUMSTANCES? ON WHAT PREMISES? * LEWIS A. DEXTER, Ph.D. Fellow, Woodrow Wilson International Center for Scholars Washington, D.C.
THIS is a somewhat different presentation from the one I gave orally at the Academy conference. That was simply a summary of some points which are explicated more systematically in my article, "Social Theory of Mental Deficiency," in the American Journal of Mental Deficiency 62:920-28 (1958), and in my book, Tyranny of Schooling (New York, Basic Books, I964). The brilliant and creative statement of Dr. David Sackett has stimulated me to reorganize part of my approach and to fit it into a broader perspective. I am here concerned with "high grade" retarded persons, chiefly those who either do not suffer from any clear medical symptom but whose behavior is regarded by some persons as creating a problem or who, although suffering from some medical symptom which may have some bearing on their substandard intellectual competence, could in fact function adequately in many situations and societies but simply cannot handle the requirements of literacy, schooling, abstract thought, etc. in our culture. Dr. Zena Stein and other persons with better medical and epidemiological credentials than mine have more to say about those who suffer from severe defects of the nervous system. It is uncertain that high-grade retardation is or ought to be a medical issue, but in our world many matters which are not really medical or physiological in nature are referred to physicians, who also act as counselors or advisors; for example, physicians at times engage in marital counseling. The great majority of persons who are called "simpletons," *Presented in part in a panel, Strategies for Prevention: Mental Illness and Mental Retardation, as part of the 1974 Annual Health Conference of the New York Academy of Medicine, Prevention and Health Maintenance Revisited, April 25 and 26, 1974.
Vol. 51, No. 1, January 1975
I 70
L. A. DEXTER
170L.
the merely "stupid," the people who do not and apparently cannot perform the intellectual tasks demanded by schools and by the requirements of literacy, do not differ physiologically in any detectable way from other people. They merely behave differently. Since these differences in behavior frequently appear in certain families and often are correlated with social class, it is generally inferred that there is some sort of inherent difference in behavioral capacity between many of the retarded and many other persons. (Sweeping generalizations of this sort, of course, need to be qualified for application to specific instances. It is highly probable that in some cases deficiencies in nutrition or other handicaps of development may be related to mental functioning.) The available evidence: e.g., that gathered by Dr. Stein and Mervyn Susser, suggests that the school and its related requirements make mental retardation the problem that it is for most of those who suffer from it. For example, in a chapter of my book, Tyranny of Schooling, I have pointed out that a society which emphasized physical grace in the same way that ours emphasizes mental performance would make many clumsy and gauche people into objects of social concern and often hamper them in developing independent lives. Similarly, the available evidence, as gathered in a number of studies reported in my article, cited above, in the American Journal of Mental Deficiency, suggests very strongly indeed that, once schooling and such heavily abstract activities as calculating credit charges or dealing with legal issues are set aside, most retardates can and do manage to live and function successfully.* High-grade mental retardation is a problem for essentially three reasons: i) As I have just mentioned, a number of these persons find it almost impossible to get anything out of the normal school situation (this is of course also true of a number of people who are not mentally retarded by any discernible test). 2) Personnel tests and other such requirements often exclude retardates from consideration, and the increasing mobility of our society probably makes it harder for those without a visible handicap to claim special consideration for themselves in the few areas with which they cannot cope. For example, in a small quasi-rural Puerto Rican town we *This subject was analyzed at greater length by Carlos Albizu-Miranda, Howard Stanton, and Norman Mattiu in The Successful Retardate in Puerto Rico (San Juan, Puerto Rico, Off. Vocational Rehabilitation, 1966-1967).
Bull. N. Y. Acad. Med.
PREVENTION OF HIGH-GRADE MENTAL RETARDATION
I 7 I
found a person who ranked near the bottom of the high-grade retarded scale managing to run a restaurant satisfactorily; local tax officials and friends knew him and would help him just as most of us would give an armless man some special consideration. In a big city he would have found it more difficult. A professional acquaintance of mine reports successfully using several boys who were clearly at the very bottom of the "normal retardate" scale as messengers where the job was routine. Other boys who were similar in most respects could not manage the same job because they were more loquacious, and people suspected or teased them. The discriminating variable in a city was being laconic. 3) Those high-grade retardates who, due to some genetic throwback, developmental oddity, or whatever, are born into upwardly mobile or middle-class families sometimes constitute a source of embarrassment and shame to their parents or relatives. Interestingly, however, the first two retardates of this sort I ever met were each members of distinguished families whose cousins and siblings were able to cope with them without the slightest embarrassment or bother. A fourth reason may also be mentioned, although it overlaps No. I above. There is a kind of crusading fervor, a zeal for education, in many social groups today which makes us wish to spend an infinite amount of effort on making somebody educated by some standard. A good many people ought to be educated, of course; skilled physicians or lawyers, for instance, must receive and comprehend a highly abstract set of ideas. But the mere fact that many people ought to be educated does not (as I tried to show in Tyranny of Schooling) mean that everybody ought to be educated in the formal sense. We are always confronted in such matters with a cost-benefit ratio; unfortunately the faith in schooling in our society (and the absence of viable alternatives for half-grown youngsters) has caused many persons to feel that everybody must be educated. Why? Now, screening for high-grade retardation does not, so far as we know, prevent its development. That is, we can determine which individuals are retarded or potentially retarded at any age without being able to significantly influence their intellectual development. Here, a word about cultural bias and other such factors might be in order in this regard. It is probably impossible to construct culture-free tests of intellectual capacity; therefore, testing conducted over a period of time is only common sense. Vol. 51, No. 1, January 1975
I177 2
A. DEXTER L..A.DXE
However, there is no guarantee whatsoever that a given ethnic group or linguistic family will have the same proportion of retardates as other ethnic groups or linguistic families. For example, if some early settlers of one isolated island were retarded and prolific, it would be natural to find more retardates in that island than in some other country. By the same process of thinking, any one familiar with the Ibos of Nigeria would expect to find a higher percentage of individuals who are highly competent at abstract, intellectual skills than in many other societies. Observation of each given case is clearly desirable, since unusual cultural factors may explain unusual scores; when these factors can be determined then appropriate action can be undertaken. Action should not bE undertaken out of a vague humanitarian notion that anybody who is "disadvantaged" has suffered a handicap which would lead to retardation. The evidence lies clearly in the opposite direction. Certainly, screening for high-grade retardation does not seem to prolong life or reduce morbidity among the retarded. The identification of an individual as retarded does, in certain circumstances, impose a stigma upon him or her which it would be preferable to avoid. In many societies without compulsory schooling it might be perfectly possible to disregard the phenomenon altogether or to regard it as just one of numerous variations in conduct, and of no particular importance. But in our society we do require schooling and we do expose individuals to such phenomena as credit and paying taxes by complex legal formulae which often tax the comprehension of the mentally more able members of our society. Therefore, it is desirable to know which individuals are going to have unusual difficulties in school and it is desirable to explain to their worried parents or teachers that a good many retardates do adjust and function adequately as adults. It would be helpful if a school system were flexible enough to accept what each child can do, rather than requiring him to perform at "normal" intellectual levels. It is particularly helpful if parents and teachers try to find out what the retardate can do reasonably well and encourage him to do this. According to informants, the retarded restaurant manager in Puerto Rico, previously referred to, was told by relatives at age 14, after he had been forced to repeat the second grade several times, "Now everybody knows you are very, very stupid but that is no reason you can't make a good living," and was in effect apprenticed to a restaurant owner. There must have been more Bull. N. Y. Acad. Med.
PREVENTION OF HIGH-GRADE MENTAL RETARDATION
I 7 3
than normal care and attention to detail in his training, but nothing at all impossible or inconceivable. I would assume-though we did not inquire about this while the Puerto Rican study was underway-that some local accountants assisted him when necessary. My recollection is that a sister (and later a wife) did the ordering and conducted the correspondence with wholesalers and suppliers. Of course, in modern society such an experience is unusual for retardates because they generally perform better as members of a work force than as self-employed or partially self-employed individuals. In a medium-sized work group the best allowance can be made for the particular weaknesses of a given person. This situation is not peculiar to the retarded; there are individuals in many work groups who are particularly poor at some mechanical work or calculation and who are assisted by their mates in these areas, but who on the whole perform adequately. There are some individuals who can get along in society by performing simple tasks usefully and unobjectionably but who would find the more difficult and complex responsibility of raising children in the modern world too difficult. (Large families also make poverty more unbearable and some retardates earn relatively small incomes.) Courts have recently ruled that sterilization should be imposed only where the persons sterilized can give informed consent. But one characteristic of the retardate is precisely the inability to make the kind of cost-benefit calculation which informed consent on such matters calls for. Courts which raise this issue are dealing with artificial products of their imaginations rather than with living human beings. The defenders of "civil liberties" who initiated or stimulated such suits are pursuing a doctrine rather than trying to determine the true needs of the individuals in question and their putative offspring. Since, however, sterilization and genetic counseling are often regarded as falling within the field of the physician, this is a matter about which physicians ought to reflect. Actually, the major issue is not genetic. It is whether the retarded person is equipped to handle the responsibilities involved in raising children in our complex society. Many persons who can handle a simple job would be overwhelmed by the demands of child rearing-or at least would suffer a good deal more than usual.
Vol. 51, No. 1, January 1975
SCREENING AND PREVENTION OF HIGH-GRADE MENTAL RETARDATIONTO WHAT PURPOSE? UNDER WHAT CIRCUMSTANCES? ON WHAT PREMISES? * LEWIS A. DEXTER, Ph.D. Fellow, Woodrow Wilson International Center for Scholars Washington, D.C.
THIS is a somewhat different presentation from the one I gave orally at the Academy conference. That was simply a summary of some points which are explicated more systematically in my article, "Social Theory of Mental Deficiency," in the American Journal of Mental Deficiency 62:920-28 (1958), and in my book, Tyranny of Schooling (New York, Basic Books, I964). The brilliant and creative statement of Dr. David Sackett has stimulated me to reorganize part of my approach and to fit it into a broader perspective. I am here concerned with "high grade" retarded persons, chiefly those who either do not suffer from any clear medical symptom but whose behavior is regarded by some persons as creating a problem or who, although suffering from some medical symptom which may have some bearing on their substandard intellectual competence, could in fact function adequately in many situations and societies but simply cannot handle the requirements of literacy, schooling, abstract thought, etc. in our culture. Dr. Zena Stein and other persons with better medical and epidemiological credentials than mine have more to say about those who suffer from severe defects of the nervous system. It is uncertain that high-grade retardation is or ought to be a medical issue, but in our world many matters which are not really medical or physiological in nature are referred to physicians, who also act as counselors or advisors; for example, physicians at times engage in marital counseling. The great majority of persons who are called "simpletons," *Presented in part in a panel, Strategies for Prevention: Mental Illness and Mental Retardation, as part of the 1974 Annual Health Conference of the New York Academy of Medicine, Prevention and Health Maintenance Revisited, April 25 and 26, 1974.
Vol. 51, No. 1, January 1975
I 70
L. A. DEXTER
170L.
the merely "stupid," the people who do not and apparently cannot perform the intellectual tasks demanded by schools and by the requirements of literacy, do not differ physiologically in any detectable way from other people. They merely behave differently. Since these differences in behavior frequently appear in certain families and often are correlated with social class, it is generally inferred that there is some sort of inherent difference in behavioral capacity between many of the retarded and many other persons. (Sweeping generalizations of this sort, of course, need to be qualified for application to specific instances. It is highly probable that in some cases deficiencies in nutrition or other handicaps of development may be related to mental functioning.) The available evidence: e.g., that gathered by Dr. Stein and Mervyn Susser, suggests that the school and its related requirements make mental retardation the problem that it is for most of those who suffer from it. For example, in a chapter of my book, Tyranny of Schooling, I have pointed out that a society which emphasized physical grace in the same way that ours emphasizes mental performance would make many clumsy and gauche people into objects of social concern and often hamper them in developing independent lives. Similarly, the available evidence, as gathered in a number of studies reported in my article, cited above, in the American Journal of Mental Deficiency, suggests very strongly indeed that, once schooling and such heavily abstract activities as calculating credit charges or dealing with legal issues are set aside, most retardates can and do manage to live and function successfully.* High-grade mental retardation is a problem for essentially three reasons: i) As I have just mentioned, a number of these persons find it almost impossible to get anything out of the normal school situation (this is of course also true of a number of people who are not mentally retarded by any discernible test). 2) Personnel tests and other such requirements often exclude retardates from consideration, and the increasing mobility of our society probably makes it harder for those without a visible handicap to claim special consideration for themselves in the few areas with which they cannot cope. For example, in a small quasi-rural Puerto Rican town we *This subject was analyzed at greater length by Carlos Albizu-Miranda, Howard Stanton, and Norman Mattiu in The Successful Retardate in Puerto Rico (San Juan, Puerto Rico, Off. Vocational Rehabilitation, 1966-1967).
Bull. N. Y. Acad. Med.
PREVENTION OF HIGH-GRADE MENTAL RETARDATION
I 7 I
found a person who ranked near the bottom of the high-grade retarded scale managing to run a restaurant satisfactorily; local tax officials and friends knew him and would help him just as most of us would give an armless man some special consideration. In a big city he would have found it more difficult. A professional acquaintance of mine reports successfully using several boys who were clearly at the very bottom of the "normal retardate" scale as messengers where the job was routine. Other boys who were similar in most respects could not manage the same job because they were more loquacious, and people suspected or teased them. The discriminating variable in a city was being laconic. 3) Those high-grade retardates who, due to some genetic throwback, developmental oddity, or whatever, are born into upwardly mobile or middle-class families sometimes constitute a source of embarrassment and shame to their parents or relatives. Interestingly, however, the first two retardates of this sort I ever met were each members of distinguished families whose cousins and siblings were able to cope with them without the slightest embarrassment or bother. A fourth reason may also be mentioned, although it overlaps No. I above. There is a kind of crusading fervor, a zeal for education, in many social groups today which makes us wish to spend an infinite amount of effort on making somebody educated by some standard. A good many people ought to be educated, of course; skilled physicians or lawyers, for instance, must receive and comprehend a highly abstract set of ideas. But the mere fact that many people ought to be educated does not (as I tried to show in Tyranny of Schooling) mean that everybody ought to be educated in the formal sense. We are always confronted in such matters with a cost-benefit ratio; unfortunately the faith in schooling in our society (and the absence of viable alternatives for half-grown youngsters) has caused many persons to feel that everybody must be educated. Why? Now, screening for high-grade retardation does not, so far as we know, prevent its development. That is, we can determine which individuals are retarded or potentially retarded at any age without being able to significantly influence their intellectual development. Here, a word about cultural bias and other such factors might be in order in this regard. It is probably impossible to construct culture-free tests of intellectual capacity; therefore, testing conducted over a period of time is only common sense. Vol. 51, No. 1, January 1975
I177 2
A. DEXTER L..A.DXE
However, there is no guarantee whatsoever that a given ethnic group or linguistic family will have the same proportion of retardates as other ethnic groups or linguistic families. For example, if some early settlers of one isolated island were retarded and prolific, it would be natural to find more retardates in that island than in some other country. By the same process of thinking, any one familiar with the Ibos of Nigeria would expect to find a higher percentage of individuals who are highly competent at abstract, intellectual skills than in many other societies. Observation of each given case is clearly desirable, since unusual cultural factors may explain unusual scores; when these factors can be determined then appropriate action can be undertaken. Action should not bE undertaken out of a vague humanitarian notion that anybody who is "disadvantaged" has suffered a handicap which would lead to retardation. The evidence lies clearly in the opposite direction. Certainly, screening for high-grade retardation does not seem to prolong life or reduce morbidity among the retarded. The identification of an individual as retarded does, in certain circumstances, impose a stigma upon him or her which it would be preferable to avoid. In many societies without compulsory schooling it might be perfectly possible to disregard the phenomenon altogether or to regard it as just one of numerous variations in conduct, and of no particular importance. But in our society we do require schooling and we do expose individuals to such phenomena as credit and paying taxes by complex legal formulae which often tax the comprehension of the mentally more able members of our society. Therefore, it is desirable to know which individuals are going to have unusual difficulties in school and it is desirable to explain to their worried parents or teachers that a good many retardates do adjust and function adequately as adults. It would be helpful if a school system were flexible enough to accept what each child can do, rather than requiring him to perform at "normal" intellectual levels. It is particularly helpful if parents and teachers try to find out what the retardate can do reasonably well and encourage him to do this. According to informants, the retarded restaurant manager in Puerto Rico, previously referred to, was told by relatives at age 14, after he had been forced to repeat the second grade several times, "Now everybody knows you are very, very stupid but that is no reason you can't make a good living," and was in effect apprenticed to a restaurant owner. There must have been more Bull. N. Y. Acad. Med.
PREVENTION OF HIGH-GRADE MENTAL RETARDATION
I 7 3
than normal care and attention to detail in his training, but nothing at all impossible or inconceivable. I would assume-though we did not inquire about this while the Puerto Rican study was underway-that some local accountants assisted him when necessary. My recollection is that a sister (and later a wife) did the ordering and conducted the correspondence with wholesalers and suppliers. Of course, in modern society such an experience is unusual for retardates because they generally perform better as members of a work force than as self-employed or partially self-employed individuals. In a medium-sized work group the best allowance can be made for the particular weaknesses of a given person. This situation is not peculiar to the retarded; there are individuals in many work groups who are particularly poor at some mechanical work or calculation and who are assisted by their mates in these areas, but who on the whole perform adequately. There are some individuals who can get along in society by performing simple tasks usefully and unobjectionably but who would find the more difficult and complex responsibility of raising children in the modern world too difficult. (Large families also make poverty more unbearable and some retardates earn relatively small incomes.) Courts have recently ruled that sterilization should be imposed only where the persons sterilized can give informed consent. But one characteristic of the retardate is precisely the inability to make the kind of cost-benefit calculation which informed consent on such matters calls for. Courts which raise this issue are dealing with artificial products of their imaginations rather than with living human beings. The defenders of "civil liberties" who initiated or stimulated such suits are pursuing a doctrine rather than trying to determine the true needs of the individuals in question and their putative offspring. Since, however, sterilization and genetic counseling are often regarded as falling within the field of the physician, this is a matter about which physicians ought to reflect. Actually, the major issue is not genetic. It is whether the retarded person is equipped to handle the responsibilities involved in raising children in our complex society. Many persons who can handle a simple job would be overwhelmed by the demands of child rearing-or at least would suffer a good deal more than usual.
Vol. 51, No. 1, January 1975
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