Library Collections: Document: Full Text

-*Presented at the Round Table on Social Aspects of Mental Retardation, XII International Congress of Pediatrics, Mexico City, December 1968.-

-**Professor of Human Development, The Florence Heller Graduate School for Advanced Studies in Social Welfare, Brandeis University. Waltham, Mass. 02154.-

Fifteen years ago when Grover F. Powers, the distinguished American pediatrician, was presented by the American Pediatric Society with the John Rowland Medal, he greatly surprised his colleagues by devoting his acceptance address to a treatise on "the retarded child and his family as a challenge to pediatric practice, research and education." (1) He said at the outset "I offer no apology for my subject. Here are major problems perhaps as old as human life itself but still too low on the totem poles of medical respectability and of scientific concern. We have recognized the problems but too many of us have done as the priest and Levite in the ancient parable -- we have 'passed by on the other side.'"

After pointing up the quantitative impact of mental retardation as one of the major, if not the major area of childhood disability, and contrasting it with the inadequate response from the field of practice. Dr. Powers went on to say , "When there is no cure, we doctors sometimes capitulate too easily to therapeutic defeatism forgetting that the physician is just as responsible for alleviating as for curing; action is just less urgent, not less vital."

There is no question that since Dr. Powers issued this challenge in 1953 there has been a very substantial increase of interest in mental retardation on the part of individual pediatricians as much as on the part of the American Academy of Pediatrics, and the pages of the pediatric journals bear testimony to this.

In studying mental retardation problems and services during the past several years in some thirty countries around the globe, my wife and I have found a similar development almost everywhere. In India or in Poland, in Australia and in Brazil, we are requested to report on new developments in the field of mental retardation. However, the requests are coming from the large university hospitals and clinics and from public health officials -- there is very considerable evidence that private practitioners continue to shy away from the mentally retarded child. The significance of this neglect and its underlying cause was highlighted by Paul Pearson when he called the mentally retarded child "The Forgotten Patient," (2) pointing out that "the physician's traditional concern for his patient seems to have been displaced by his concern for the parents and other members of the patient's family or even the community. In other words, after he makes the initial diagnosis and neatly classifies the retarded, the physician's role as it pertains to treatment becomes focused on the parents."

Obviously, the reasons for such continued rejection of the mentally retarded are to be found in the broader socio-cultural area. Other professions such as education, social work, psychology and sociology have similarly pushed aside the mentally retarded, but perhaps this can be observed most clearly in the field of law because of the exacting nature of its formulations. It is undeniable that in the field of mental retardation the cruelties and superstitions of medieval thinking are still clearly reflected not only in popular beliefs but also in public life and legal provisions and processes. There are, of course, striking differences from country to country as advances in knowledge promote a better understanding but frequently one can encounter remnants of the old views which essentially denied the mentally retarded person basic attributes as a human being and, in many ways, treated him as a "non-person", and as a social menace. Thus Tizard characterized the English mental deficiency laws as having a "semi-protective, semi-punitive character" (3) , while Kirschen desribes the corresponding legal situation in Belgium as insufficient, incoherent and inappropriate for the specific needs of the mentally retarded. (4)

(4) Kirschen, Gilbert, L'Arriere Mental Devant La Loi, in: L'Arriere Mental Adulte, Bruxelles, Association Nationale pour l'Aide aux Enfants Retardes, 1964.

It is against this unfavorable background that in the most recent years a major effort is being made to arrive at a radically different legal basis for safeguarding the well-being of the mentally retarded and their families, with due consideration to the interests of society. Indeed, this new effort is a complete departure from the previous formulation of "the State versus the mentally retarded", recognizing that the well-being of the State is dependent on the well-being of all its citizens, no matter how gifted or how limited, how healthy or how disabled. Much of the initiative and the force behind this has come, nationally and internationally, from the movement beginning in the late 1940s by parents of the mentally retarded in countries around the world.

Underlying these efforts was thinking most clearly conceptualized in the Scandinavian countries in the principle of normalization. (5) Normalization in this context represents a conscious effort in all that is being done and planned for and with the mentally retarded and their families to come as close to normal living situations as is feasible, considering the degree of intellectual, physical and social disability of the retarded person or persons involved.

It would seem important to emphasize at this point that the term mental retardation is used in my presentation today in line with the recent report by an Expert Committee of the World Health Organization entitled "Organization of Services for the Mentally Retarded" (6) ,that is to say, it encompasses all degrees of intellectual impairment, mild, moderate, severe and profound. This terminology coincides with that of the 8th Revision of the International Classification of Diseases, but for inclusion of the category "borderline mental retardation" to which the WHO Expert Committee took exception.

In June 1967 the International League of Societies for the Mentally Handicapped brought together in Stockholm at a Symposium on Legislative Aspects of Mental Retardation thirty representatives from fourteen national member societies of the League, including a number of lawyers and physicians. The Symposium (7) clearly recognized the wide variations in practices from country to country, depending on resources, as well as cultural and political traditions. However, the participants from the many countries nevertheless found it possible to develop common agreement on standards that could guide the various countries in reviewing and changing legislative provisions for the mentally retarded.

It is not possible within the limited time available to report here in detail on the full range of recommendations of the Symposium but I do want to refer to what I consider their major achievement -- a statement on individual rights. In the past, legislation addressed itself mainly to the problem of constraining the mentally retarded, limiting their freedom of action, prescribing confinement in institutions, permitting their exclusion from vital services, such as public schools, imposing obligations on their parents or providing parent surrogates. The recommendations of the Symposium reversed this essentially negative approach and instead set forth some broad general principles encompassing the individual rights of the mentally retarded person as a human being.

More recently, at the Fourth International Congress of the International League of Societies for the Mentally Handicapped, the proposals of the Stockholm Symposium served as a basis for a formal Declaration of General and Special Rights of the Mentally Retarded, adopted unanimously by the assembly. Its succinctness and pertinence for the topic assigned to me suggest that it be quoted here in full:

"Whereas the Universal Declaration of Human Rights, adopted by the United Nations, proclaims that all of the human family, without distinction of any kind, have equal and inalienable rights of human dignity and freedom; Whereas the Declaration of the Rights of the Child, adopted by the United Nations, proclaims the rights of the physically, mentally or socially handicapped child to special treatment, education and care required by his particular condition. Now therefore, the International League of Societies for the Mentally Handicapped expresses the general and special rights of the mentally retarded as follows:

ARTICLE I

The mentally retarded person has the same basic rights as other citizens of the same country and same age.

ARTICLE II

The mentally retarded person has a right to proper medical care and physical restoration and to such education, training, habilitation and guidance as will enable him to develop his ability and potential to the fullest possible extent, no matter how severe his degree of disability. No mentally handicapped person should be deprived of such services by reason of the costs involved.

ARTICLE III

The mentally retarded person has a right to economic security and to a decent standard of living. He has a right to productive work or to other meaningful occupation.

ARTICLE IV

The mentally retarded person has a right to live with his own family or with fosterparents; to participate in all aspects of community life, and to be provided with appropriate leisure time activities. If care in an institution becomes necessary it should be in surroundings and under circumstances as close to normal living as possible.

ARTICLE V

The mentally retarded person has a right to a qualified guardian when this is required to protect his personel -sic- well-being and interest. No person rendering direct services to the mentally retarded should also serve as his guardian.

ARTICLE VI

The mentally retarded person has a right to protection from exploitation, abuse and degrading treatment. If accused, he has a right to a fair trial with full recognition being given to his degree of responsibility.

ARTICLE VII

Some mentally retarded persons may be unable, due to the severity of their handicap, to exercise for themselves all of their rights in a meaningful way. For others, modification of some or all of these rights is appropriate. The procedure used for modification or denial of rights must contain proper legal safeguards against every form of abuse, must be based on an evaluation of the social capability of the mentally retarded person by qualified experts and must be subject to periodic reviews and to the right of appeal to higher authorities. ABOVE ALL -- THE MENTALLY RETARDED PERSON HAS THE RIGHT TO RESPECT."

To some members of this audience, this bill of rights may sound unrealistic, and far too broad in its provisions. In actuality the exact opposite is the case. Unrealistic, that is, not in accordance with the realities of the given case, has been the traditional approach to the mentally retarded by way of broad prejudgements, rigid categorization, and a general tendency to exclude the mentally retarded from ordinary services and benefits on the basis of these categorical preconceptions.

In most countries there would be little doubt that a young child's most basic right is to live and grow up in his family home. For a small but nonetheless significant number of mentally retarded children this right is denied when they are confined in an institution. Very often this step is either initiated or supported by physicians under circumstances which are open to serious question. In many cases, a physician may recommend institutionalization "for the good of the family"; frequently this means saving the parents from social embarrassment, but what about the right of the child? He is not a "'thing" that can be disposed of like property (as used to be done with slaves). In other instances, it is the lack of community facilities and services, or the attitude of the public or certain professions, rather than the need of the child, which causes his confinement. (8) Very frequently a decision is made to send a child to an institution or hospital (which easily may become a lifetime banishment) without due consideration by the physician and the participating authorities of other solutions which would far less interfere with the child's basic rights. (9) "We are dealing here with a phenomenon that is highly unusual, if not unique, in the practice of medicine. There are e.g. many medical administrators of mental retardation institutions who are convinced, who indeed 'know', that they are receiving in their institution children with Mongolism who are not only not helped but who are actually harmed by being in the institution. Yet, year in, year out, these administrators continue to keep these children with Mongolism confined (and I am using this term advisedly) in these institutions without so much as an official protest. Where in the field of medical practice would one find a parallel to this situation?" (10)

(9) Allen, Richard C., Legal Rights of the Mentally Retarded: Equal Justice for the Unequal, paper presented at the 4th International Congress, International League of Societies for the Mentally Handicapped, Jerusalem, October 1968 (mimeographed).

(10) Dybwad, Gunnar, Medical Needs of the Displaced Retarded Child, presented at the 43rd Ross Conference on Pediatric Research, New York City, 1962, in: Dybwad, Challenges in Mental Retardation, New York, Columbia University Press, 1964.

But it is not only the child sent away from home whose rights are in jeopardy. In many countries the severely and profoundly retarded child is being excluded from service in health centers and clinics for no other reason than that he is retarded, even though their medical services would be appropriate for him. One of the hardest and most heartbreaking problems encountered by parents is the lack of interest in, if not outright rejection of their mentally retarded child by the pediatrician or general practitioner they are consulting, even though once again the medical services he is requested to render are well within the province of his practice. (11) A working party organized in 1962 by the Paediatric Society of the South-east Metropolitan Region (London) saw no justification for general hospitals to refuse admission to mentally retarded children merely because of their mental handicap. (12) None of these comments in any way militates against specialized services for the mentally retarded where such are appropriate to cope with special medical, psychological or social needs.

(12) The Needs of Mentally Handicapped Children -- Report of a Working Party set up by the Paediatric Society of South-East Metropolitan Region, London, National Society for Mentally Handicapped Children, 1962.

Several problems of a more specific nature need to be mentioned here. One is the use of mentally retarded children for medical experimentation such as the testing of new drugs or other modes of untried therapies, something that occurs all too frequently. Another pertains to the ever-recurring advocacy of euthanasia. In the Spring of 1968, I was shocked to read in a distinguished American journal an article advocating euthanasia or, in any case, withholding of indicated treatment, for infants born with Mongolism. Two months later in three different cities in Australia I was asked in the course of television interviews whether there was not merit in such a proposal. That respect for the mentally retarded on the most elementary level implies respect for his right to live, was most forcefully brought out by Judge Heinen of Bonn at an international congress in Paris in 1966. (13) A third area of concern is that of psychological testing. Frequently, poorly evaluated tests, secured under clinically questionable circumstances, are used indiscriminately by physicians, judges and other public officials as a basis for decisions affecting the lifetime of a retarded person. (14)

(14) Heinen, Bert, Achtung vor dem Leben, in: Stress on Families of the Mentally Handicapped, 3rd International Congress, International League of Societies for the Mentally Handicapped, Bruxelles, International League of Societies for the Mentally Handicapped, 1966.

Sterilization is a related issue. Among the countries which previously have utilized this intervention very freely, Denmark in recent years has sharply reduced the use of sterilization. After an exhaustive study of sterilization procedures in several States of the U.S.A. by the Institute of Law, Psychiatry and Criminology of George Washington University, Washington, D.C., it was concluded that there is no sound basis for sanctioning the continuance of involuntary sterilization. Furthermore, the Institute found that in many cases so-called voluntary sterilization was in reality coercive and not at all voluntary. (15) Altogether, the mere diagnostic finding of mental retardation can no longer be considered a valid basis for automatic imposition of restrictions of heterosexual relationships. "After all, marriage and sex are highly precious human rights, not to be tampered with easily." (16) The point made here is not that this problem area should be ignored. Rather, it should be approached in a positive way, with full recognition of the rights of the mentally retarded on the one hand, and the welfare of society on the other. In other areas of societal life, we do not tolerate repressive measures violating individual freedom merely to eliminate all chance of possible damage. If these same criteria are applied in the case of the mentally retarded, on the basis of the extensive available knowledge gained from research and practice, many measures and restrictions now in use will be found in need of revision.

(16) Sterner, Richard, Rights of the Mentally Retarded, paper presented at the XIV International Conference on Social Welfare, Helsinki, 1968 (mimeographed).

Time does not permit discussion of other legal questions of interest to physicians in the care of the mentally retarded, such as the right to education at public expense, the right to be appropriately occupied and to be paid wages proportionately to one's production, and the right to financial assistance commensurate with commonly accepted standards in the community. The new concept of the mentally retarded person's entitlement to all the rights of other citizens, unless there is sound basis for a specific abridgement, implies a revision of guardianship practices (17) , both in terms of graduation of the degree of tutelage and in terms of the guardian's role in protecting the personal interests of the mentally retarded individual against undue intervention by those responsible for his care.

In the opinion of one magistrate (18) who carefully reviewed, step by step, the findings of the Stockholm meeting and of the supporting papers submitted by the participants, the Symposium opens up such a flow of new and vital thought that it may indeed be somewhat confusing to those of us used to traditional approaches. Therefore, he recommends a major study by teams of specialists who, having collected further data, can develop more specific recommendations and procedures. This, in turn, must become the basis of a specific appeal to the public conscience so that change can indeed be effected.

It should be obvious that such findings will be of great importance in guiding the practicing physician in his work in this field. It should be equally obvious that physicians, knowledgeable and experienced in the care of the retarded, would be able to make a most significant contribution in such efforts to bring justice to the mentally retarded citizens.