Library Collections: Document: Full Text

THE UNDEVELOPED RESOURCE AT THE EDGE OF CHANGE (1)

Gunnar Dybwad (2)

Your theme for today is "The Undeveloped Resource at the Edge of Change". If you listened with care this morning, you found that undeveloped or not, this resource has an edge that is quite sharp and may cause some pain and, indeed, there may even be a little bit of blood.

Essentially we are here to talk about change and how much of it came and why more did not come. Throughout the United States one can observe isolated examples of very excellent specialized programs for the mentally retarded which have been in existence for many years and yet, not only in the neighboring states, but very often in the very same state, they have not been adopted or adapted by others.

A large number of professional workers representing many disciplines have written reports on outstanding services for the mentally retarded in other countries, and have furnished elaborate documentation through the printed word, through photographs and slides. Numerous committees and commissions -- and certainly you had no dearth of them in California -- have reported on needs. As a matter of fact, I still refer back to some of the earlier reports from the California Legislative Committees which were far advanced, with sweeping recommendations for improvements. President Kennedy's campaign to combat mental retardation was, of course, of particular significance. President Johnson's Committee on Mental Retardation, in its report in 1967 and again in 1968 was no less critical and no less adamant that sweeping changes had to be made than had been President Kennedy's original panel in 1962. Yet with all of this, progress has been amazingly slow.

Now I think it might be good if we stopped talking for a little while this noon as to what you ought to have, and try to find out why it is that you are not getting it. What are the obstacles to change? An overall national problem, brought out this morning, is the way in which society at large, communities, and also certain societal institutions still perceive the retarded as a deviant person. I think we have a long way to go before we can effectively change these attitudes. Every once in a while we get some very grim reminders such as the Atlantic Monthly article, you will recall from earlier this year, which advocated euthanasia for all children born with mongolism. Every once in a while you get a glimpse at the depth of such feelings that still exist and which we conveniently try to overlook because we have a tendency to overlook the unpleasantness. Certainly, this kind of role perception, as the sociologist would say of the mentally retarded as a deviant person or, as that article suggested, a non-person, is change inhibiting.

Another inhibiting factor is the sheer extent and size and monetary value and, last but not least, the economic utility for certain communities of the current physical plants, facilities and services of the large institutions for the mentally retarded. They tend to block, or at least effectively delay, action towards change. This is again an unpleasant topic. We do not like to suggest that people make money by building institutions, all sorts of people, all sorts of money, money which is not made when funds are used to hire needed staff. Thus, certainly the momentum of the current service pattern centering on large institutions is another effective inhibiting source for change.

Looking at this problem from a broad or nationwide prospectus, one can characterize the present development of mental retardation services in the United States somewhat as follows: Although there has been widespread advocacy for increased emphasis on non-residential services, the need for residential services is perpetuated and reinforced by the placing of a low fiscal priority on non-residential services and of a high fiscal priority on maintenance and, in many states, still on construction of residential facilities. The result is a shortage of non-residential services, which, of course, in turn, leads to an accentuation of the urgency for the creation of additional residential services, which are storing up an ever larger number of individuals since those ready to return to the community cannot be released, cannot return because of the inadequacy of funds for non-residential service. Here is a real vicious circle all through the country, representing, I repeat, the momentum of the current service pattern. System maintenance is what this is called by the sociologists, who have become more and more fascinated with this phenomenon.

But then, of course, we have some other inhibiting factors toward change. Different groups have investments in different services and certainly there are several professional groups who have a very substantial investment in the present institutional system. They are concerned with their job status, job security, job opportunities and this is a definite inhibiting factor. About that there can be no doubt, because enough public documents have been released by the particular professional organizations to make quite sure they will neither lose their jobs nor their influence.

Yet another strong inhibiting factor is a very human failing -- a denial of reality. The need for change can be effectively repressed by denying unpleasant realities which would underline the urgency for change. When Burton Blatt, the head of the Department of Special Education at Boston University, undertook with a photographer friend to expose the shocking conditions in American institutions for the mentally retarded, and produced the book "Christmas in Purgatory," he was attacked. And this is not at all a rare occasion. Those who point at institutional atrocities will find themselves much more sharply attacked than those who commit them.

Even Senator Robert Kennedy had the experience that the people of the State of New York had very little interest in listening to an account of the truly horrible conditions existing in a large state institution for retarded children located within the boundaries of New York City and serving some 5,000 people. And they were even less inclined to do something about it. Professor Sarason of Yale, in that respect, recently quoted "the eyes that do not see, ears that do not hear, minds that deny the evidence before them."

There is another very interesting and paradoxical maneuver. We had a clear example of it in Massachusetts when the movie "Titticut Follies" was produced, depicting conditions in the Bridgewater institution. Let me assure you, this was a very fine, sensitive film which really was done with a very sympathetic eye and in no way exploited the situation in terms of showing individuals. But in a paradoxical yet sanctimonious successful maneuver, the State administration protested against this invasion of the privacy of institution residents, thereby blocking effective exposure of institutional practices which result day by day in routine denial of elementary privacy and rights to dignity for the residents!

And then we have something else, a flower that grows particularly well in California soil, a kind of patriotism, state chauvinism, or even parochialism. The great state of so-and-so proudly proclaiming its pre-eminence in industry and finance, in culture and education, cannot afford to let it be known that with all its riches, its glittering state office buildings, its highways and freeways, it treats in its institutions human beings, as you well know, in ways a dairy farmer would not treat his cattle.

When President Kennedy met for the first time with his Panel on Mental Retardation he turned to the chairman, Mr. Mayo, and said "Mr. Mayo, what do we have to learn from foreign countries?" Mr. Mayo assured him quickly that the panel would send abroad some task forces. And in typical Kennedy fashion, this was the first question Jack Kennedy raised a year later when the panel submitted its report.

With his phenomenal memory, he turned to the chairman and said "Mr. Mayo, what did we learn from foreign countries?" Well, as you know, we learned a good bit but strangely our administrators seem resentful about it, and hesitate to apply it.

To say that California is remarkably advanced in the care of the retarded may be a nice attempt to please the Governor, but it just is not helpful at all. And to be very frank with you, I thought in this morning's session we had some very bad instances of this. You were assured again and again that you are really quite good. Let me tell you, you are not! Let me tell you that there are smaller states that will show up much more favorably. One part of your problem -- and fifteen months ago I tried to convey this to you at the Annual Convention of the California Council a little bit less vociferously -- is that you have and always have had a need to point out that really you are better than the others. It reminds me of the story of a woman who mot the new Episcopalian Rector in town and she said "Reverend, how are you?" And he said "Well, I tell you, Mrs. Frank, I do not like things at all. Sunday the church is half full and at the Wednesday evening vesper service barely a handful of people." And she said "You are so right, Reverend, you are so right. But the Lord be praised, the Methodists are not doing any better."

Why do you have this hesitancy to admit that something is grossly wrong -- a hesitancy, by the way. President Kennedy did not have? He very forcefully said "Here is one field in which we are behind, and badly behind." I wish -- and I am addressing myself to the California Council very specifically, as an organization -- I wish you would have the courage of your conviction and not always have this bland and meaningless politeness, this reluctance to speak out.

Why do you not turn to the task at hand? We all love California. Yours is one of the most important States. Yours is one of the richest States. Yours is a State that has greater resources than most others, because everybody wants to come to you. So why should you, first of all, be content to compare yourself with others? But, secondly, why do you not take a closer look and really see what others are doing?

Fifteen months ago when I met with you for the annual meeting of the California Council I made a very few comments about certain unfortunate things at Sonoma State Hospital. The speech is taped. You can listen to it. I made no gross accusations or judgements -sic-. Yet the reaction I got was "That is no way to talk about our institution and the Nelson Building. Why did you have to do so at our dinner?" Well, Tom Nelson is a good friend of mine, but I cannot help that he allowed his name to go on a building which represents not only an outdated program idea, but, in addition, is a prime example of wasteful and damaging design, an architectural atrocity that has made you "famous" the country over.

Why is it that you cannot face up to these things? Why is it that you always have to cover up things with qualifying statements? I made one point fifteen months ago: "Do not just blame the present administration for the predicament in which you find yourself. Because it goes back -- far back." You know it. But you never admitted it in the past. And now when things really get rough, you are making some statements which I do not think are quite correct.

Yet, things are, maybe, changing, I hope. I agree with Leo Cain that there is a difference between 1964 and 1968. The increasing confrontation we have in this country in many fields, the sharpening of issues, may perhaps help you to have the courage to come to similar confrontations in this area. Healthy controversy is of greatest help toward producing change. Vigorous exchange of viewpoints should never be impeded. And if you have the opportunity to discuss things in meetings like this and debate issues straightforwardly, you certainly should try and do so, and not equivocate, just to be polite.

After all, President Kennedy's panel spoke out very forthrightly that throughout the country the quality of care in our institutions was low, was highly objectionable. Mental Retardation 67, the first report of the President's Committee on Retardation, used much harsher words, saying "many of these institutions are plainly a disgrace to the nation and to the state that operates than." This year's report, MR 68, signed -- may I say -- by two eminent Californians, one of them sitting here and the other sitting in Los Angeles, said "Many of the nearly 200,600 residents in state institutions for mentally retarded live in disgraceful conditions which the state's own regulatory agencies would not tolerate in private facilities." And, of course, I am mindful that one of the speakers today pointed this out and appealed to you to try and translate this into action.

If official government reports can use this kind of language, why should you have this terrible need always to be so desperately polite? You see, we are not attacking individual human beings. What we are talking about is a system, a system which -- I repeat -- has been in existence for a long time. You deal with an establishment, a bureaucracy, a professional power structure with various other power structures attached to it, and this cannot be blamed, when it manifests itself in any one location on individual persons.

Dr. Vail, the head of the institutions in Minnesota for mental illness and mental retardation, had the courage to write a book entitled "Dehumanization and the Institutional Career", in which he mercilessly presents a detailed documentation of the many ways in which institutions serving the mentally ill and the mentally retarded go about stripping away from the residents their human dignity, their identity, their motivation, their privacy, their basic human rights. He got the evidence from his own institutions. He has not resigned. But he has clearly identified the evils he wants to fight. And unless you clearly identify the things that need to be changed in California, you cannot really expect change to occur. Pointing them out does not have to be accompanied by blaming individuals. I say this over and over again. Because what we are addressing ourselves to are conditions which by far precede the individuals now in office.

Now let me come more specifically to some of the problems we discussed here today. First I would like to make a suggestion to you. The Governor of a State is not a person who can act on his own; he is facing, and has to work with distinguished citizens of the state who represent the highway lobby, and distinguished citizens of the state who represent the retail merchants lobby and so on and so on. I need not take your time by reciting this. So, maybe some time you need to get a little help for the Governor by more vigorously recruiting a lobby from the general public on behalf of the retarded. And I would say if we cannot get administrative relief, if the administration assures us that they do not see how they can do more, that they do all they can do, let us use an important traditional weapon our system of government makes available to us -- let us go to the courts.

Some very interesting things are happening in this country. A little while ago, the Supreme Court, on the petition of an individual, issued a very important decision -- the Gualt decision -- which is resulting in a very radical change in the way in which we are treating juvenile delinquents in this country. Administrative relief had not been forthcoming, somebody went to the court, the court reaffirmed certain principles, and now we have change.

In Washington, D.C., there recently has been a case known as Rouse vs. Cameron -- Dr. Cameron being a world-famous psychiatrist who is the Superintendent of St. Elizabeth's Hospital. A particular person being confined there -- confined as a mentally ill person against his will, went to court and claimed that he was confined illegally because he had been confined there for treatment but was not getting any treatment. The court upheld this view and significantly was supported by the American Orthopsychiatric Association -- one of our most distinguished multidisciplinary professional organizations of which our leading child psychiatrists and adult psychiatrists, psychologists, social workers, and therapists, are members. The Association filed a brief as friend of the court pointing out that they agreed with the main point that was on debate: Is it feasible for a court to arrogate upon itself the right to decide what is treatment or not? In a very reasonable and well reasoned, rather conservative way, they said very definitely the court can establish a certain frame of reference as constituting the minimum essentials of treatment and anything outside of it just is not treatment. Of course, once such a court decision is issued, the administration has a mandate far stronger than any mandate even the combined voluntary organizations could ever lay on the desk of the Governor.

It just so happens that exactly three days ago in Boston a similar suit was filed, this time on behalf of a juvenile delinquent and different from the Supreme Court's Gault decision that dealt with juvenile court procedures. This case deals with methods of treatment in a state institution, and the court petition sets forth very clearly that what was happening in that institution constituted inadequate treatment without any doubt and that, therefore, this young man would have the right to his freedom. Since, obviously, he should not have his freedom because he needs some constraining influence, it is very clear that the state will have to act on this and bring about change.

I am sorry that there is no time to discuss here the Bill of Rights of the Mentally Retarded which was passed in the presence of some eminent people from California at the recent International Congress of the International League of Societies for the Mentally Handicapped. This whole concept that the mentally retarded have basic human rights, and, furthermore, that these human rights could be enforced, is a very new one, but it is coming. At various times I have urged administrators of state programs to read carefully the "signs on the wall" before they become subject emanating judicial interference. I wish we could talk about the whole involvement emanating from this new recognition of the rights of the mentally retarded, but we cannot do so today.

Let me now make a comment about this morning's discussion on this whole problem of socio-economic deprivation which, as you know, is a problem that has overwhelmed us for a long time and is very often unfairly treated by our looking sternly at the school and saying "What are you planning to do about it?" Whereas, of course, what we should do is to ask the community and its citizenry "What are you going to do about it?", because the schools cannot help but reflect the basic views of the community and its citizens.

Kingsley Davis, a sociologist at Berkeley, wrote in an article, "The Perilous Premise of Behavior Science", a very interesting commentary which will perhaps help you recognize why we are not moving in this area. As you know, the President's Panel on Mental Retardation was led to state in 1962 "If we would apply what we know, we could wipe our S0% of mental retardation problems." Did we not hear that this morning again? That is right, that is what the man said! But Kingsley Davis says "Given the great promise that social science holds for solving our problems, one is puzzled by what appears to be a mocking reality. I have observed, for instance, that solutions to social problems -- (such as were discussed this morning regarding socio-economic deprivation) -- I have observed that solutions to social problems tend to have three characteristics: first, they are extremely simple, especially compared to technological solutions; second, they are fool-proof -- that is if they were applied, they would solve the problem; thirdly, they are not being applied." Why not? Because of the very point that here we are touching on some basic, hurtful manifestations of social ill which the community keeps covered over. And even should they come to the fore, we quickly try to cover them up again.

Here, of course, is a very interesting parallel to the problem of juvenile delinquency. We have known in this country for fifty years what to do about juvenile delinquency, but who is going to tell Columbia University to get rid of the slums? Who is going to tell the churches which are slum owners in this country to clean up the property? Who is going to interfere with all the social realities well known, well written about in this country which spawn juvenile delinquency? And so it is with the effects of this socio-economic deprivation which we tell Ernie Willenberg sternly he ought to discontinue forthwith in his schools. I do not think he can do sol

We talked about coordination this morning and about the role of the mental retardation program board which became the Mental Retardation Program and Standards Advisory Board. Let me here have the freedom of stating a contrary opinion and, in turn, I give you the freedom to ignore it because I have my air ticket and I will be soon back home. But I think the idea of having somewhere in the departmental hierarchy a separate board that controls budgets of other agencies is preposterous; is amateurish. It violates the whole process of government. In sane states it would be literally unconstitutional, and, in any case, it goes against the whole structure of independent agencies.

Coordination of governmental agencies can be done only in one place and that is in the executive department. And control of budgets can be only done in one place and that is within the budget office of the executive department. And that is exactly what Massachusetts has done. The Bureau of Mental Retardation in the State of Massachusetts is in the Department of Administration and Finance. It is part of the budget office and, as such, controls budget to the extent the governor examines and controls departmental budgets as part of the legitimate governmental process. And the Department of Administration and Finance is at the same time -as is the Federal Bureau of the Budget) the planning agency of the State. Thus, both budget control, planning and coordination in mental retardation moves along in Massachusetts because they put the mechanism where it belongs -- at the executive level of government, above all the other departments.

You have kept on saying that your Board is going to coordinate all mental retardation activities. I never had the pleasure of meeting Max Rafferty, but I would just like to hear him when you say, "Max, we are going to coordinate your special education programs."

So when it comes to planning and coordination in mental retardation, you had better take a good, long look at what you really want to accomplish and then set about doing it the right way. But do not try and kid yourself with a paper organization. It just is not possible.

Now time is getting short and I cannot try to deal with more specific problems, problems you share with many other states. I only want to make over and over again this one comment: There are more smaller states in this country who do well in mental retardation than larger ones -- and some of our biggest problems and greatest retardation in retardation exist in our large states with the big sprawling bureaucracies which cannot really help themselves because they have so many builtin impediments.

But let me leave you with some thoughts of a little more general nature. I implied earlier that I certainly agreed with President Kennedy that there were some other countries in the world who, in this particular area, were far ahead of us; and as you know, the Scandinavian countries are countries where this is particularly the case. And from them has come to us a concept which only now we are beginning to really see more clearly, and I include myself most definitely in this "Me" although, as you know, I have some rather close ties over there and I have been visiting innumerable times in these countries, particularly in the area of mental retardation.

But only now I begin to see how terribly important is the concept to which they ascribe their entire mental retardation approach -- the concept of normalization. It is a concept that is elegant in its simplicity and parsimony. It can be readily understood by everyone and, at the same tine, it has really far-reaching implications. When you visit mental retardation services in Denmark or Sweden and, observing some things, ask "Why do you do this?", they most likely will just say "This is the normal way of doing things." That is why they have this kind of room for the mentally retarded; that is why they have this kind of schedule; that is why they have that kind of arrangement. It is the normal thing! Proceeding from that assumption, they only deny the normal situation, the normal furnishings, the normal food, the normal eating time, the normal bed time, the normal way of being addressed as a human being -- when there is some very compelling reason.

From my years of visiting institutions for the mentally retarded (although I started out at Letchworth Village thirty years ago, my intensive visiting only goes back 8-10 years), I would say we do the opposite; we simply take for granted the abnormal, and we extend the normal only as a privilege. Hence, this principle of normalization -- this insistence on thinking of people in a normal way -- is so very, very important, because it leads you to think more and more of people as human beings and to become more and more concerned about the harmful effect of categories and labeling, and categorical labelings.

The other day, I had to look up a letter I had written to Mr. Krause and just to show you that I do not just shoot off my mouth loudly in public, but I very often quietly shoot it off in correspondence, let me read what I wrote to him in June, 1967: "I have just seen the May bulletin of the Sacramento Association for the Retarded which states on page one that at Sonoma State Hospital, with a of population of 3,500, the number of nonambulatory patients has soared from 400 to almost 1,200. I am very much concerned about that statement because it implies a real danger in terms of official treatment policy toward these individuals. What does it mean that a patient is non-ambulatory? Do you realize that both my children were non-ambulatory, yet subsequently were able to go through college and even graduate school? As a matter of fact, I have heard that all children start out non-ambulatory. How old are these 1,200 non-ambulatory patients at Sonoma? What is their background? Why are they non-ambulatory? Is there a substantial number among them whose condition calls for orthopedic intervention? Is there a substantial number among them where ambulation will depend on intervention by intensive training programs? How many of them show an advanced degree of, e.g., hydrocephalus, which makes ambulation a physical improbability, if not impossibility?" I hope you see what I am trying to convey to you -- this illustrates the concept of normalization. You just cannot call 1,200 people non-ambulatory and then try to prescribe for them on that basis.

The broad concept of normalization can be implemented by some subsidiary principles, and I want very quickly to name them to you so you can see that we really have a frame of reference through which we can tackle our problems in a sensible and thoughtful basis.

The first principles by which the Scandinavians implement normalization is integration, which refers to those measures and practices which maximize a retarded person's community living and community participation. Of course, there are degrees to this, very obviously. But the main point is that we should not be exclusive, but inclusive. Individualization as an essential feature of normalization assures social approval by granting maximum integration into those normal life patterns of which a retarded person is capable at any given time. This simply means a complete turning away from past practices. Let me give you an example. There is now in the State of Illinois a project on the drawing board -- it has gone through preliminary approval -- where they have for a group of severely and profoundly retarded individuals a plan with houses for eight. I did not say units; I said houses for eight, in order to have a grouping where one can do a maximum job of integration. There are other states trying to move in this direction. Let me not be tempted to tell more about this.

Dispersal is the other principle the Scandinavian countries use. Of course, you have started out on a very important aspect of this with the establishment of the Regional Centers. And in that respect, may I say I am very happy that you have not committed one mistake which has cost progressive Connecticut headaches no end. Connecticut has combined its regional centers with residential facilities and now the whole concept of the Regional Center and its basic function which you have well defined here in your State is, in Connecticut, in extreme danger. This is so because the fellow who runs the residential facility for 200 human beings is so taken up with it, has to worry so much about important things like toilet paper -- and I happen to believe that that is important -- and soap and towels and proper toilet seats and all such things, that he has no time to develop the community facilities on which the Center's activities should focus.

So, I am very happy that in your beginning dispersal you have certainly moved in the right direction, and I want to echo what was said this morning that the thought of having the existing institutions serve as regional centers would scuttle the whole plan or, at least, pervert it totally. Your State Report, of course, foreshadowed dispersal when it said you needed to develop many kinds of community related residential services.

The third one of the Scandinavian principles is specialization. You can travel through a Scandinavian country and find a little place where you see these older institutions housing, e.g, 40 aged people who live by themselves. It is a specialized institution. In other words, not only have they dispersed institutions but dispersed institutions need to be specialized because they cannot possibly serve all comers as some of our privately operated institutions have been tempted to do, and found difficult to do. Specialization, then, goes along with dispersal and means that we are going to have specialized facilities, such as for the aged, emergency homes, school homes, hostels for the people who can work in the community. And may I just add that in Sweden they now actually have developed some hostels right in an apartment house. One additional comment. When it comes to small residential facilities, we should stop building and try to use, until we have gained more experience, existing community facilities because the purpose built hostels all have a tendency to be like little institutions. Strangely, it appears to be a most difficult task to build an informal place.

The final principle in Scandinavia is one I think we have readily understood ever since the Report of President Kennedy's Panel, and that is the question of continuity. Continuity is essential in terms of available services but so is continuity between those aspects of a person's life which are supported by special services and those which are not. There is a danger that we develop continuity in such a way that we slide a fellow along from service to service and so overprotect him that he never has a chance to try and see how he might do on his own, an opportunity he should have.

This quick summary of what we have learned from the Scandinavian countries will convey to you that we can really build into our frame of reference some basic principles in such a way that we can develop rational programs. If you will in community as much as in state planning make it your habit to refer to these principles and to check yourself that you really do apply them, you will have an orderly process in which to proceed planning and not just a process to "make do."

I talked with you today in great frankness and thought I could do so because I really feel that I am among friends in California and that my long relationship with the California Council and the continuing correspondence which we have, which, by the way, never ceased even during the years I was over in Switzerland, gave me the freedom to talk with you straightforwardly.

Mental Retardation is a problem in which we are faced in this country with a very sad situation -- a situation which really is a disgrace to our country. But, at the same time, let me say that I have told the Swedes and the Danes that in a few years they are going to come to us to learn. In a few years they will see that when we really apply ourselves and free ourselves of the shackles of the past; we will do things out of technical know-how and also out of our strength of conviction and our way of life, that will make them jealous. I do not know the difference between an optimist and a pessimist, I just know I am an optimist and I look at the tasks ahead of us from a very bright and sunny perspective. But at the same time, I must again say, you will never get where you need to go unless you first, very clearly, admit to yourselves where you are now and what needs to be done to move you forward.