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However, mere money cannot bring about the needed changes. Among the greatest obstacles are the attitudes in the minds of those who administer institutional programs, not merely those on the institution level but also those on the state level. It may be necessary to remove from office those individuals who see retarded persons as subhuman, or as human but primarily as menaces, as diseased organisms, or as incapable of growth and adaptation. In their place, it is essential to have individuals who see the retarded as human beings, as citizens, and as developing, adaptive persons.

Here, it is worthy of note that among present program administrators, Vail's (1966) book on dehumanization and Blatt and Kaplan's (1966) pictorial demonstration of the subject have not produced much apparent effect. Can the field trust those who are so comfortable with the status quo? Can it rely on them for leadership toward the needed changes? How is one to utilize persons who do not perceive the evidence before their eyes and ears?

Needed Documentation. Early in this chapter we have discussed the sad consequences of the unwillingness to face the realities of cruel, harmful, and inhuman treatment in institutional settings. Through recent years the opposite has also been noted by competent observers in this country: an unwillingness to acknowledge the validity and indeed the existence both in our country and abroad of new and vitally different service measures and facilities, and of their success. Obviously, what is needed is careful comprehensive and convincing documentation, documentation that can not only be utilized to persuade responsible administrators, legislators, and citizens leaders, but that can also be utilized to train staff to assist in the change to new approaches, procedures, and techniques. The motion picture or video camera in the hands of a skilled and sensitive photographer who is, in turn, guided by a small team of experts can bring back results which will be well worth the expenditures, particularly as these results can not only be made available so readily on a nationwide basis to residential facilities and the responsible state departments but can also form invaluable teaching tools in various institutions of higher learning.

Human Management Programming

Human management seems to be a most appropriate vehicle to introduce the concept of normalization into the service delivery systems on behalf of the mentally retarded. In this section, an attempt will be made to reinforce points stated elsewhere in this chapter regarding the change and reorientation that must be effected in our pursuit of these new objectives.

Obviously, normalization for the mentally retarded individual can best be maintained and safeguarded if this principle is brought into play at the very beginning of his lifespan. And this, of course, implies that normalization must govern and apply equally to the parents of the mentally retarded child. A great deal has been written on what needs to be done to improve counseling and informational services to parents, particularly at the time they are informed of the fact that their child is or is suspected to be mentally retarded (for an exhaustive survey of this, see Wolfensberger, 1967; Wolfensberger & Kurtz, 1969). But very little has been done and is presently available to assist the parents in their child management, particularly in cases of severely and profoundly retarded children, who often manifest even in the very earliest developmental stages special needs, and who create special problems which are most disconcerting and puzzling to the family.

The beginnings of the process of dehumanization become quickly evident when institutional placement is recommended for a severely impaired infant who at that particular time does not offer special management problems, as is common with the child with mongolism. Not only is a low level of expectation urged upon the parent at a time when there is little clinical basis for such prediction but services are withheld or put into question which would be extended to other children as a matter of course. The key slogan, so well known, to many parents, is the phrase "Why bother?" Why bother with remediation of minor physical defects, why bother with intensive health supervision, why bother with feeding problems, etc.? And all too often in the background there is the question. Why keep him alive? Usually, this is unspoken, but in 1968 a professor of theology wrote in one of America's most sober magazines: "In dealing with Down's cases, it is obvious that the end everybody wants is death," and he made quite clear that he meant death by the physician's hand, at or immediately after birth (Bard & Fletcher, 1968).

Of course, the cautious member of the medical association is not likely to make such a drastic pronouncement in a specific case, and is even less likely to act on it. Instead, he may accommodate himself with the recommendation that the child be immediately placed in an institution, often coupled with the suggestion that the mother not see the child. Official policy notwithstanding, this is still an all-too-frequent occurrence in the United States. It is not the point of this discussion to judge or belabor the difference between the physician who practices euthanasia at birth, the physician who recommends lifetime banishment to an institution, and the physician who waits for the first serious illness as the appropriate opportunity to terminate life by withholding available therapy. The emphasis here is on the broader implication of this viewpoint, which, in a less acute form, simply conveys: my practice (or our clinic) is too valuable to be concerned with "this type of case." And in the process, the parent is segregated and de-normalized along with his child.