Library Collections: Document: Full Text


Christmas In Purgatory: A Photographic Essay On Mental Retardation

Creator: Burton Blatt and Fred Kaplan (authors)
Date: 1974
Source: Available at selected libraries
Figures From This Artifact: Figure 2  Figure 3  Figure 4  Figure 5  Figure 6  Figure 7  Figure 8  Figure 9  Figure 10  Figure 11  Figure 12  Figure 13  Figure 14  Figure 15  Figure 16  Figure 17  Figure 18  Figure 19  Figure 20  Figure 21  Figure 22  Figure 23  Figure 24  Figure 25  Figure 26  Figure 27  Figure 28  Figure 29  Figure 30  Figure 31  Figure 32  Figure 33  Figure 34  Figure 35  Figure 36  Figure 37  Figure 38  Figure 39  Figure 40  Figure 41  Figure 42  Figure 43  Figure 44  Figure 45  Figure 46  Figure 47  Figure 48  Figure 49  Figure 50  Figure 51  Figure 52  Figure 53  Figure 54  Figure 55  Figure 56  Figure 57  Figure 58  Figure 59  Figure 60  Figure 61  Figure 62  Figure 63  Figure 64  Figure 65  Figure 66  Figure 67  Figure 68  Figure 69  Figure 70  Figure 71  Figure 72  Figure 73  Figure 74  Figure 75  Figure 76  Figure 77  Figure 78  Figure 79  Figure 80  Figure 81  Figure 82  Figure 83  Figure 84  Figure 85  Figure 86  Figure 87  Figure 88  Figure 89  Figure 90  Figure 91  Figure 92  Figure 93  Figure 94  Figure 95  Figure 96  Figure 97  Figure 98  Figure 99  Figure 100  Figure 101  Figure 102  Figure 103  Figure 104  Figure 105  Figure 106  Figure 107  Figure 108  Figure 109  Figure 110  Figure 111  Figure 112  Figure 113  Figure 114  Figure 115  Figure 116  Figure 117  Figure 118  Figure 119  Figure 120  Figure 121

Page 1   All Pages

1  

When a commercial publisher discontinues, as in this case, publication of a book it is because it is no longer profitable. This does not necessarily mean that people do not want to buy the book. It can mean that the escalating costs of printing and promotion -- and, of course, the need to maintain certain profit levels -- put the costs of the book out of the reach of most people, e.g., students. (Fairness requires that I acknowledge the fact that the previous publisher was the only one willing to take a chance with so "different" a book.) Some extraordinarly -sic- good books have sunk into oblivion. It would have been immoral, or at least an adverse commentary on our societal values, if Christmas In Purgatory was allowed to be available only in libraries (those which had copies). For one thing, this was an historic document. It was extraordinarily "profitable" in terms of its international influence on thinking, values, practices, and planning (not, ironically, in Dr. Blatt's home state where huge building complexes for the retarded continue to be developed). It was a simple, easily grasped, compelling, upsetting visual document which stood as a reminder of what existed in our society, and as a criterion by which to judge any derivative of our propensity to segregate people who are or look "different." It is noteworthy that in his last book, Souls in Extremis, Dr. Blatt concludes that purgatory is inherent in our concept of institutions, and he recommends that we close them and build no more. Precisely because institutional purgatories exist today and will continue to exist for the foreseeable future, Christmas In Purgatory should continue to be available. We should be grateful that it will be.

2  

Seymour B. Sarason
Yale University

3  

INTRODUCTION

4  

"They cover a dung hill with a piece of tapestry when a procession goes by."
Miguel de Cervantes

5  

There is a hell on earth, and in America there is a special inferno. We were visitors there during Christmas, 1965.

6  

During the early fall of that year. United States Senator Robert Kennedy visited several of his state's institutions for the mentally retarded. His reactions to these visits were widely published in our news media. These disclosures shocked millions of Americans and infuriated scores of public office holders and professional persons responsible for the care and treatment of the mentally retarded.

7  

A segment of the general public was numbed because it is difficult for "uninvolved" people to believe that in our country, today, human beings are being treated less humanely, with less care, and under more deplorable conditions than animals. A number of the "involved" citizenry -- i.e. those who legislate and budget for institutions for the mentally retarded and those who administer them -- were infuriated because the Senator reacted to only the worst of what he had seen, not to the worthwhile programs that he might have. Further, this latter group was severely critical of the Senator for taking "whirlwind" tours and, in the light of just a few hours of observation, damning entire institutions and philosophies.

8  

During the time of these visits I was a participant in a research project at The Seaside, a State of Connecticut Regional Center for the mentally retarded. The superintendent of The Seaside, Fred Finn, and I spent a considerable amount of time discussing the debate between Senator Kennedy and his Governor, Nelson Rockefeller. We concluded the following. It does not require a scientific background or a great deal of observation to determine that one has entered the "land of the living dead." It does not require too imaginative a mind or too sensitive a proboscis to realize that one has stumbled into a dung hill, regardless of how it is camouflaged. It is quite irrelevant how well the rest of an institutions's -sic- program is being fulfilled if one is concerned about that part of it which is terrifying. No amount of rationalization can mitigate that which, to many of us, is cruel and inhuman treatment.

9  

It is true that a short visit to the back wards of an institution for the mentally retarded will not provide, even for the most astute observer, any clear notion of the antecedents of the problems observed, the complexities of dealing with them, or ways to correct them. We can believe that the Senator did not fully comprehend the subtleties, the tenuous relationships, the grossness of budgetary inequities, the long history of political machinations, the extraordinary difficulty in providing care for severely mentally retarded patients, the unavailability of highly trained professional leaders, and the near-impossibility in recruiting dedicated attendants and ward personnel. But, we know, as well as do thousands of others who have been associated with institutions for the mentally retarded, that what Senator Kennedy claimed to have seen he did see. In fact, we know personally of few institutions for the mentally retarded in the United States completely free of dirt and filth, odors, naked patients groveling in their own feces, children in locked cells, horribly crowded dormitories, and understaffed and wrongly staffed facilities.

10  

After a good deal of thought, I decided to follow through on a seemingly bizarre venture. One of my close friends, Fred Kaplan, is a freelance photographer who has worked for many national publications. The following plan was presented to him. We were to arrange to meet with each of several key administrative persons in a variety of public institutions for the mentally retarded. If we gained an individual's cooperation, in spite of the obvious great risk he would be assuming with respect to his institutional status and possible job security, we would be taken on a "tour" of the back wards and those parts of the institution that he was most ashamed of. On the "tour" Fred Kaplan would take pictures of what we observed, utilizing a hidden camera attached to his belt. During the month of December, 1965, we visited -- at our own expense -- five state institutions for the mentally retarded in four eastern states. Through the efforts of courageous and humanitarian colleagues, including two superintendents who put their reputations and professional positions in jeopardy, we were able to visit the darkest corridors and vestibules that humanity provides for its journey to purgatory and, without being detected by ward personnel and professional staff, Fred Kaplan was able to take hundreds of photographs.

11  

The latter point deserves some comment. Our photographs are not always the clearest and, probably, Fred Kaplan is not proud of the technical qualities of every one published in this book. On the other hand, it required a truly creative and skilled photographer to take these pictures, "from the hip" so to speak, unable to use special lighting, not permitted to focus or set shutter speeds, with a small camera concealed in multitudes of clothing and surrounded by innumerable "eyes" of patients as well as of staff. Although our pictures could not even begin to capture the total and overwhelming horror we saw, smelled, and felt, they represent a side of America that has rarely been shown to the general public and is little understood by most of us.

12  

We do not believe it is necessary to disclose the names of the institutions we visited. First, we have a deep debt of gratitude to those who permitted us to photograph that which they are most ashamed of. To reveal the names of the places we visited is, assuredly, an invitation to invite their instant dismissal. However, we have a much more forceful reason for not admitting to where we have been. These pictures are a challenge to all institutions for the mentally retarded in the United States. We are firmly convinced that in many other institutions in America we could have taken the same pictures -- some, we are sure, even more frightening.

13  

Our "Christmas in Purgatory" brought us to the depths of despair. We now have a deep sorrow, one that will not abate until the American people are aware of -- and do something about -- the treatment of the severely mentally retarded in our state institutions. We have again been caused to realize that "Man's inhumanity to man makes countless thousands mourn."

14  

It is fitting that this book -- our purgatory in black and white-was written on the 700th anniversary of the birth of Dante.

15  

B.B.

16  

PURGATORY I
"Abandon all hope..."

17  

"Abandon all hope, ye who enter here."
Dante

18  

This book is divided into two major sections. The first section covers our visits to four institutions for the mentally retarded, located in three eastern states. The second section describes a fifth institution in another state. The latter is our way of communicating our deep conviction that many of the severe conditions with which you are about to become involved are not necessary consequences of the fact of institutionalization of mentally retarded individuals. These problems are largely the result of inadequate budgets, inferior facilities, untrained personnel, and haphazard planning -- in spite of some dedicated and skilled professional workers in each of the institutions we visited. For example, the average per capita daily cost for maintaining a retarded resident in each of the four institutions we are about to describe is less than $7.00 and, in one state school, less than $5.00. In contrast, The Seaside, a regional center for the retarded sponsored by the Connecticut Department of Health, spends $12.00 daily for the care and treatment of each resident.

19  

As was mentioned in the foreword, we are not disclosing the names either of the institutions or the states where they are located with the exception of -- for obvious reasons -- the contrast institution. As far as the contrast institution, The Seaside, is concerned, we will be speaking about that one Center. We make no claim that The Seaside is representative or not representative of the Connecticut program for the mentally retarded although the State of Connecticut is to be commended for this -- at least one -- affirmation of the dignity of all mankind.

20  

We repeat something already said, needing emphasis. What was observed in the institutions presented in Part I reflects what we have seen in other state institutions for the mentally retarded in other parts of the country. We know of few state institutions that do not -- to a degree -- have problems similar to the ones discussed in this book. The Seaside is one of the rare examples where one may see every ward -- without becoming revolted or depressed. To be sure, every institution we visited during our Christmas recess had many things of which to be proud and further, each is accomplishing good work in care and treatment. However, with the exception of The Seaside, each had made miniscule progress, especially in those areas concerning the care of severely retarded ambulatory adults and moderately and severely retarded young children. It is in the hope of calling attention to the desperate needs of these institutions and thereby paving the way for upgrading all institutions for the mentally retarded in all dimensions of their responsibilities that this study was undertaken.

21  

Several things strike the visitor to most institutions for the mentally retarded upon his arrival. Often there are fences. Sometimes with barbed wire. Frequently the buildings impress him with their massiveness and impenetrability. We have observed bars on windows and locks -- many locks -- on inside as well as outside doors.

22  

As we entered the dormitories and other buildings, we were impressed with the contrast of the functional superiority of the new buildings and the gross neglect of the older buildings. We have observed gaping holes in ceilings of the main kitchen. In toilets, one sees urinals ripped out, sinks broken, and toilets backed up.

23  

In every institution discussed in this section, we found incredible overcrowding. Beds are so arranged -- side by side and head to head -- that it is impossible, in some dormitories, to cross parts of the rooms without actually walking over beds. Often the beds are without pillows. We have seen mattresses so sagged by the weight of bodies that they were scraping the floor.

24  

In summary, we were amazed by the over-crowdedness, by the disrepair of older buildings, by the excessive use of locks and heavy doors, and by the enormity of buildings and numbers of patients assigned to dormitories.

25  

PURGATORY I
"Man's inhumanity to man..."

26  

"Man's inhumanity to man
Makes countless thousands mourn."
Robert Burns

27  

All doors in the living quarters of institutions that we visited had locks, regardless of the age or severity of retardation of the patients immured. These locks are on outside doors as well as inside doors. Doors are made of heavy gauge metal or thick wood. It is routine for attendants to pass from room to room with key chain in hand, unlocking and locking doors en route.

28  

Many dormitories for the severely and moderately retarded ambulatory residents have solitary confinement cells or, what is officially referred to as "therapeutic isolation." "Therapeutic isolation" means solitary confinement -- in its most punitive and inhumane form. These cells are usually located in the basements of large dormitory buildings. Sometimes they are located on an upper floor, off to the side and away from the casual or official visitor's scrutiny. They are generally tiny rooms, approximately seven feet by seven feet, shielded from the outside with a very heavy metal door having either a fine strong screen or metal bars for observation of the "prisoner." Some cells have mattresses, others blankets, still others bare floors. None that we had seen (and we found these cells in each institution visited) had either a bed, a washstand, or a toilet. What we did find in one cell was a thirteen or fourteen year old boy, nude, in a corner of a starkly bare room, lying on his own urine and feces. The boy had been in solitary confinement for several days for committing a minor institutional infraction. Another child, in another institution, had been in solitary confinement for approximately five days for breaking windows. Another had been in isolation through a long holiday weekend because he had struck an attendant. Ironically, in the dormitory where this boy was being incarcerated, we saw another young man who had been "sent to bed early" because he had bitten off the ear of another patient. Apparently, it is infinitely more serious to strike an attendant (and it should not be misunderstood that we condone this) than to bite off the ear of another patient.

29  

In another institution we saw a young man who was glaring at us through the opening in the door of his solitary cell, feces splattered around this opening. He, too, was being punished for breaking an institutional regulation. In this particular dormitory, we had a good opportunity to interview the attendant in charge. We asked him what he needed most in order to better supervise the residents and provide them with a more adequate program. The attendant's major request was for the addition of two more solitary confinement cells, to be built adjacent to the existing two cells that, we were told, were always occupied, around the clock, day in and day out.

30  

We saw children with hands tied and legs bound. After discussions with attendants and supervisors in the four institutions, we were convinced that one of the major reasons for the heavy use of solitary confinement and physical restraints was the extraordinary shortage of staff in practically all of these dormitories. The attendant who requested the construction of two additional solitary confinement cells was, with one assistant, responsible for the supervision of an old multilevel dormitory, housing over 100 severely retarded ambulatory adults. Almost in desperation he asked us, "What can one do with those patients who do not conform? We must lock them up, or restrain them, or sedate them, or put fear into them."

31  

At that point, we did not feel we had a response that would satisfy either him or us.

32  

PURGATORY I
"I sometimes wish that God were back..."

33  

"I sometimes wish that God were back
In this dark world and wide;
For though some virtues he might lack,
He had his pleasant side."
Gamaliel Bradford

34  

In each of the dormitories for severely retarded residents, there is what is euphemistically called a day room or recreation room. The odor in each of these rooms is overpowering. After a visit to a day room we had to send our clothes to the dry cleaners to have the stench removed. The facilities often contribute to the horror. Floors are sometimes wooden and excretions are rubbed into the cracks, leaving permanent stench. Most day rooms have a series of bleacher benches, on which sit unclad residents, jammed together, without purposeful activity, communication, or any interaction. In each day room is an attendant or two, whose main function seems to be to "stand around" and, on occasion, hose down the floor "driving" excretions into a sewer conveniently located in the center of the room.

35  

We were invited into female as well as male day rooms, in spite of the supervisor's knowledge that we, male visitors, would be observing naked females. In one such dormitory, with an overwhelming odor, we noticed feces on the wooden ceilings, and on the patients as well as the floors.

36  

The question one might ask is. Is it possible to prevent these conditions? Although we are convinced that to teach severely retarded adults to wear clothes one must invest time and patience, we believe it possible to do so -- given adequate staff. There is one more requirement. The staff has to be convinced that residents can be taught to wear clothes, that they can be engaged in purposeful activities, that they can learn to control their bladders. The staff has to believe that their "boys" and "girls" are human beings who can learn. Obviously, the money and the additional staff are vitally important. However, even more important, is the fundamental belief that each of these residents is a human being.

37  

PURGATORY I
"Suffer the little children..."

38  

"Suffer the little children.. ."

39  

The infant dormitories depressed us the most. Here, cribs were placed -- as in the other dormitories -- side by side and head to head. Very young children, one and two years of age, were lying in cribs, without interaction with any adult, without playthings, without any apparent stimulation. In one dormitory, that had over 100 infants and was connected to 9 other dormitories that totaled 1,000 infants, we experienced a heartbreaking encounter. As we entered, we heard a muffled sound emanating from the "blind" side of a doorway. A young child seemed to be calling, "Come. Come play with me. Touch me." We walked to the door. On the other side were forty or more unkempt infants crawling around a bare floor in a bare room. One of the children had managed to squeeze his hand under the doorway and push his face through the side of the latched door. His moan was the clearest representation we have ever heard of the lonely, hopeless man. In other day rooms, we saw groups of 20 and 30 very young children lying, rocking, sleeping, sitting -- alone. Each of these rooms were without toys or adult human contact, although each had desperate looking adult attendants "standing by."

40  

In another dormitory, we were taken on a tour by the chief physician who was anxious to show us a child who had a very rare medical condition. The doctor explained to us that, aside from the child's dwarfism and misshapen body, one of the primary methods for diagnosing this condition is the deep guttural voice. In order to demonstrate this, he pinched the child. The child did not make any sound. He pinched her again, and again -- harder, and still harder. Finally, as if in desperation, he insured her response with a pinch that turned into a gouge and caused the child to scream in obvious pain.

41  

In some of the children's dormitories we observed "nursery programs." What surprised us most was their scarcity and the primitiveness of those in operation. Therefore, we were not unprepared to see several children with severe head lacerations. We were told these were "head bangers." Head banging is another condition that some people think is inevitable when confronted with young severely mentally retarded children. We challenge this. We have reason to believe that head banging can be drastically reduced in an environment where children have other things to do.

42  

The "Special Education" we observed in the dormitories for young children was certainly not education. But, it was special. It was among the most especially frightening and depressing encounters with human beings we have ever experienced.

43  

PURGATORY I
"The wretched souls..."

44  

"The wretched souls of those who lived
Without all praise or blame."
Dante

45  

The living quarters for older men and women were, for the most part, gloomy and sterile. There were the rows and rows of benches on which sat countless human beings, in silent rooms, waiting for dinner call or bedtime. We saw resident after resident in "institutional garb." Sometimes, the women wore shrouds -- inside out.

46  

We heard a good deal of laughter but saw little cheer. There were few things to be cheerful about. A great many of the men and women looked depressed and acted depressed. Even the television sets, in several of the day rooms, appeared to be co-conspirators in a crusade for gloom. These sets were not in working order. Sadly, the residents continued to sit on their benches, in neat rows, looking at the blank tubes.

47  

We observed adult residents during recreation, playing "ring-around the-rosy." Others, in the vocational training center, were playing "jacks." These were not always severely retarded patients. However, we got the feeling very quickly that this is the way they were being forced to behave.

48  

PURGATORY I
"In bed we laugh..."

49  

"In bed we laugh, in bed we cry;
And, born in bed, in bed we die.
The near approach a bed may show
Of human bliss to human woe."
Isaac de Benserade

50  

Among the things we will remember are the beds and the benches. Early in the evening, sometimes as early as 5 P.M., patients are put to bed. This is to equalize the work load among the different attendant shifts. During the day, we saw many patients lying on their beds, apparently for long periods of time. This was their activity.

51  

During these observations, we thought a great deal about the perennial cry for attendants and volunteer workers who are more sympathetic and understanding of institutionalized retarded residents. One of the things we realized was that attendants might be sympathetic, might interact more with patients, if institutional administrators made deliberate attempts to make patients cosmetically more appealing. For example, adult male residents should shave -- or be shaven -- more than once or twice a week. Dentures should be provided for any patient who needs them. It seems plausible to believe that it is much more possible to make residents more attractive and, therefore, more interesting to attendants than it is to attempt to convince attendants that they should enjoy the spectacle of unwashed, unkempt, odoriferous, toothless old men and women.

52  

Lastly, we viewed old women and very young girls in the same dormitories and old men and young boys as comrades in the day room. In the "normal" world, there is something appealing -- even touching -- about such friendships. In an institution residents would benefit by companionship from patients their own age.

53  

PURGATORY II
"The Promised Land..."

54  

"The Promised Land always lies on the other side of a wilderness."
Havelock Ellis

55  

About ten years ago, I made several trips to a large state institution for the mentally retarded, one not visited during the current study. I became interested in and, for several days, visited a dormitory housing severely retarded ambulatory adults -- one that was very similar in population to those living quarters discussed in Part I. However, this dormitory was different in a very important way. What made this dormitory different can best be illustrated with the following story.

56  

On the occasion of one such visit, I was hailed by one of the attendants and asked to come into the day room. The attendant called over a 35 or 40 year old, partly nude male and said, "Dr. Blatt, you remember Charlie. Charlie has learned how to say hello since your last visit. Charlie, say hello to Dr. Blatt." Charlie grunted and the attendant went into a kind of ecstasy that is rarely shown by adults and, when it is, radiates warmth for everyone lucky enough to be touched by it. It should not be misunderstood that Charlie's grunt resembled anything like a hello, or any other human utterance. In a way, this attendant's reaction to Charlie might have been considered as a kind of psycho-pathology of its own. However, we have a different understanding of it.

57  

What kind of man was this attendant? In 1938 he walked, literally off the streets, into that institution -- an alcoholic, without a home of his own, purposeless and without a future -- and asked for a job. For twenty-eight years he has served as an attendant in a dormitory for severely retarded patients at this institution. He knows every "boy" there and actually thinks of them as his children and they of him as their father.

58  

Sometimes, in despair and helplessness, we ask ourselves why were these severely retarded human beings born. When one observes an attendant of the kind we have just described, it is possible to find an answer. If not for the mentally retarded this attendant might have been a drifter, an alcoholic, much less of a person than he actually is. Would it be unfair to say that this attendant needed mental retardation in order to fulfill his own destiny and obtain the greatest good he could render to society?

59  

Mental reardation -sic- can bring out the best in some people -- as well as the worst. At The Seaside, it brings out the best in a lot of different adults who are involved professionally, inter-personally, and tangentially, with the residents. The Seaside has more of the people of the kind we have just discussed, than do other places for the mentally retarded -- notwithstanding the fact that every institution, large as well as small and those discussed in Part I as well as The Seaside, has superb and dedicated attendants and professional staff as well as its quota of mediocre and poor staff. In our opinion, The Seaside has more superior personnel and fewer of the inefficient and disinterested. We believe this is a major difference between The Seaside and other institutions for the mentally retarded.

60  

The following portion of a report, written by a Seaside nursery teacher, concerning a child with whom she is working, speaks volumes about such matters as clinical sensitivity, thoughtfulness, and the value one human being is capable of placing on another. The investment and dedication of one person to another is the significant history of any case study illustrating behavioral change:

61  

She came into our Day-Care a fiery-haired five-year old with a temper the same shade. Cerebral palsied, and unable to talk, she lashed out at an unfair world with an unspeakable fury. Torn by the mixed emotions of her parents who had alternately spoiled and disciplined her, this extremely sensitive child seemed beyond control when she entered our little group. The hurricane raged for several weeks while I probed all the recesses of my mind to find the eye of the storm. We learned to duck with agility all that she threw, to keep a level head, and to follow, with the strictest adherence, a routine designed for the comfort and growth of all the children. We ignored her nonconformities. Her actions, for all intents and purposes, were not getting through to me. Furthermore, they were not impressing her classmates.

62  

All this time she watched me. She wanted me to be angry too for this was her trick in trade. Oh how I wanted to spank her for her tirades and inconsiderations but I did not because this procedure would be old hat to her.

63  

One day I was particularly tired and discouraged and she must have sensed something amiss. Spilling milk is not unusual in a pre-school situation, but our little firebrand made a last stand. She threw her milk at me with deadly accuracy. I sat stunned for a minute. As the milk dripped from my hair, I deliberated -- one false move could undo everything. I felt an angry tear in my eye. She looked at me, her face red and contorted with emotion. I didn't move. Suddenly, she staggered from the room. Still I sat, knowing I must take some action. A few moments passed. She came running back into the room, hands dripping with wet paper towels. I didn't move. She smoothed back my hair and wiped my face and clothes with erratic, awkward hands. She had suddenly dissolved into a compassion she failed to comprehend because she had never needed it; it was a brand new experience. Involuntarily my arms went out and she flew in.

64  

PURGATORY II
"We have developed a myth..."

65  

"We have developed a myth revolving about the specialness of our curricula efforts to date. In some important ways, there is as great a myth concerning the specialness of the children the curricula seek to serve."

66  

During one visit to a large state institution discussed in Part I, we were told about the development of a new research center on the institutional grounds. The assistant superintendent mentioned to us that the "materials" for the research center would come from the institution and this center would require the addition of approximately 30 or 40 "items." We were confused by the statement and, as a result of some verbal fumbling and embarrassment, we finally understood. At that institution, and apparently at others in that state, patients are called "material" and personnel are called "items."

67  

It was so difficult not to believe that this assistant superintendent was "pulling our leg" with his terminology that during our subsequent visits to dormitories in that institution we asked the attending physician "How many items do you have in this building? How much material do you have?" To our amazement, he knew exactly what we were asking for and gave us the numbers immediately.

68  

The Seaside does not deal with "material" and "items." The Seaside is a small institution of approximately 250 residents and somewhat over 100 staff. As importantly, the Center services the community where it is located. Many children and adults living at home with their families attend pre-school classes, recreation groups, sheltered workshops, and other activities sponsored by the institution.

69  

The uniqueness of The Seaside results from an extraordinarily dedicated and involved staff in a setting small enough for every child-care worker -- as well as every teacher, nurse, and administrator -- to know each child in the institution, and vice versa.

70  

At The Seaside there is time, time for teaching a young child to use a spoon or fork, time for helping a child learn to use a zipper, time to heal a wound-physical or emotional. But there is no time for tomorrow at The Seaside. There is a fight against inertia. Children must be helped today, for in too few tomorrows children become adults and residents become inmates.

71  

At The Seaside there is schooling. Some children attend school at the institution. The older and more capable youngsters attend public schools -- with other children who are living at home. The environment is designed for children. The lawns are filled with swings and jungle gyms and bicycle paths. During Christmastime, each room is decorated welcoming Santa Claus and the spirit of Christmas. Rooms are clean and orderly. Furniture is designed for children. Furniture for adults is designed for adults.

72  

There are adult residents at The Seaside, but not in the same dormitories, and programs for adults are also separate. Adults have different needs and the following may illustrate how some of these are met.

73  

One of our difficulties in photographing activities at The Seaside was our inability to take very many pictures of adult residents. Most of the adults at The Seaside are working during the day, on institutional jobs or out in the community. Some, who could not be returned to their own homes, live in a work training unit. Here they are with friends and co-workers under the careful supervision of a cottage mother and father. During the day they are on placement -- working in the community -- and in the evening they return to their "home" where they can receive special help and guidance in their successful attempts to integrate into normal communities and become contributing and useful members of society.

74  

PURGATORY II "Life is a struggle..."

75  

"Life is a struggle, but not a warfare."
John Burroughs

76  

The Seaside is people. It is small. It is expensive to operate, but it isn't as expensive as one might expect. The Seaside appropriates approximately twice the amount, per patient, that other institutions do. In contrast with per capita costs in penal institutions. The Seaside has a very modest expenditure. In terms of human suffering -- and the potential for human growth -- places like The Seaside are among the few really economical government-sponsored facilities of which we know.

77  

There is a shame in America. Countless human beings are suffering needlessly. Countless more families of these unfortunate victims of society's irresponsibility are in anguish for they know, or suspect, the truth. Unwittingly, or unwillingly, they have been forced to institutionalize their loved one into a life of degradation and horror.

78  

We challenge every institution in America to look at itself now. We challenge each institution to examine its programs, its standards, its admission policies, its personnel, its budgets, its philosophy, its objectives. We challenge every institution -- and every governor and every legislator -- to justify its personnel and their practices, its size and development, and its budget.

79  

Our experiences during Christmas, 1965, require our calling for a national examination of every institution for the mentally retarded in America -- an examination that will inspect the deepest recesses of the most obscure back ward in the least progressive state. We call for a national examination of state budgets for the care and treatment of the retarded. We hold each superintendent, each commissioner of mental health, each governor, each thoughtful citizen, responsible for the care and treatment of individuals committed for institutionalization in their state.

80  

AFTERTHOUGHTS

81  

"The triumph of evil requires only that good men do nothing.''

82  

Since we have visited the institutions described in this book, we have shown and discussed our story with a heterogeneous but carefully selected number of people. Their backgrounds range from those in very high public office to undergraduate college students preparing to be special class teachers. Editors of two of the largest and most influential news magazines previewed and discussed this book with us.

83  

Popular opinion convinced us that this story must be brought to the American people as soon as possible. In discussing this work with so many very knowledgeable persons, we were able to resolve some of our anxieties about the possible adverse reaction to the publication of this study. Further, we were able to conceptualize a plan to correct those conditions we observed.

84  

The major questions that dictated caution and deliberation before a thoughtful answer could be found were concerned with whether or not our work represented an invasion of privacy of certain individuals, on the one hand, and that the general public has a right to be protected from the knowledge of degradation, on the other. As far as invasion of privacy is concerned, we have learned that -- from a legal point of view -- this is a very ambiguous matter. Although we were forced to satisfy legal requirements for the insurance of individual's privacy -- hence, the masking of eyes of patients shown in Part I -- we must question privacy on moral grounds. We believe that the so-called privacy of the back wards of these institutions contributes to suffering, for outsiders do not know the conditions in these buildings and, therefore, do little or nothing to promote improvements. When privacy contributes to suffering, we must question the ideal of privacy. When privacy contributes to suffering, it loses its significance as a cherished privilege. For those who could so reason, we do not believe that there would be many in the institutions who would object to our exposure of these frightening conditions if such exposure offered some possibility for a better life for the residents. Lastly, as we discussed this issue with a number of people we began to wonder whose privacies were being protected, those institutionalized residents or the rest of us? This leads to the second consideration.

85  

The American people have the right to know. In spite of what we wish to know, in spite of the pain that knowing may bring to us, we have the right to be informed about any serious conditions that affect our people. There is a maturity that comes to a people when it no longer needs the protection of ignorance. Only children, with their fantasies, or sick adults, with theirs, believe that ignoring a problem can make it go away.

86  

Our recommendations derive from many sources: our experiences prior to this study, what we observed during the study, the reactions of many astute individuals to this study, and the advice of students and colleagues. The core of our proposal was originally presented by Sarason and Gladwin a number of years ago in Sarason's book, Psychological Problems in Mental Deficiency, published by Harper and Bow in 1959:

87  

It is disappointing but true that the quality of research being done in our institutions is poor. The psychological personnel are for the most part geographically, financially, and socially apart from their professional brethren. The disinterest of behavior science departments (psychology, anthropology, sociology, psychiatry) in the area of subnormal functioning makes the solution of the problem most difficult. We must frankly state that we do not have any bright ideas of how to begin to go about remedying the situation. On the assumption that this particular problem will not change markedly in the forseeable future, it might be profitable to consider a program which would allow the institutional worker to go for extended periods to certain centers where there is an active research and training program -- a center where he can possibly learn new skills and content which he could apply to research in his own setting. This suggestion, however, presupposes that there will be several research centers which can offer this kind of opportunity. An increment in skill and knowledge sufficient to justify this kind of effort can probably not be attained in a one- or two-week workshop, but should rather be viewed as requiring at least a half-year or year training course (p. 651).

88  

Can one any longer ignore the needed relationship between the state institution for the mentally retarded and the state university? In addition to the emergency need for at least doubling per capita expenditures in state institutions and for reducing the sizes of institutional populations wherever and however possible, our study of this problem leads to an additional set of recommendations that may contribute to an improvement of institutional programs and facilities:

89  

1. In each state, a board of institutional visitors should be appointed by the governor or other constituted authority. This board would be responsible for reporting directly to the highest state officials. Appointments to this board should be made regardless of political party affiliation and these appointments should be contingent on both knowledge of the broad field of human welfare and demonstrated dedicated public service. Members of this board of visitors would not be, concurrently, members of any particular institution's staff or board of trustees.

90  

2. Within each state institution for the mentally retarded, each department (e.g. medical, psychological, educational, nursing, cottage life) should have a board of advisors. This board of advisors, through periodic visits and consultations, would know the institution and its problems intimately and, thus, be in positions to advise and assist in the resolution of difficulties. In essence, the advisory board would be organized for direct consultation and assistance to the institutional staff. As this board would not be responsible for rating institutional personnel or recommending their salary increments or promotions, it is possible that members of this board would become involved with the most pressing and severe problems of the institution -- without "endangering" the positions of the staff that trusts them. In this way, it would be possible for problems currently secreted from the outside world to be given the exposure and ventilation needed for satisfactory solutions to them.

91  

3. In each state, a state university should be given responsibility and resources to provide comprehensive in-service training and consultation for all institutional employees, from the chief administrative officer to the attendant recruit.

92  

4. In each state, one state institution for the mentally retarded should be designated as a center for the in-service training of all personnel to be employed for state service in institutions and clinics for the mentally retarded. As a condition for employment as institutional superintendent, psychologist, teacher, nurse, or attendant the candidate would have to spend a specified period of time at the training center. His preparation program would range from a few weeks to one calendar year, depending upon his background and experiences and the nature of the position he intends to assume. During this training program, the candidate would be involved in clinical experiences that relate directly to his future employment, would participate in seminars, colloquia, and other instructional experiences designed to prepare him for the sensitive and demanding activities of work with the mentally retarded. At the end of the candidate's training program, the director of this facility and his staff would rate the candidate and recommend him, or not recommend him, for employment. To the degree that this program is workable with currently employed staff, every inducement and encouragement should be provided to permit them to complete this preparation.

93  

To some degree, all of us talk and behave as if we will not change. Yet, it is absolutely certain that we will change; what we profess now, in one way or another, we regret later. The most difficult truth each of us has to learn and live with is the knowledge that we aren't perfect. It was our intent to point out some of the more serious imperfections of institutions for the mentally retarded in this country. It is our belief that now that our most indefensible practices have been laid bare for public scrutiny, men of good will from all walks of life and all professions will sit down at the planning table and seek solutions to the plight of our brethren.

Page 1   All Pages

Pages:  1  2  3  4  5  6  7  8  9