To Bridge the Gap
Photography and Narration by Gerald F. Walsh
Gerald F. Walsh: As a recipient of a Rosemary Dybwad, National Association of Retarded Children award, I traveled to several northern European countries to observe services for the mentally retarded. These countries included France, Holland, Ireland, England, Norway, Sweden and Denmark. Of particular concern were laws, organizations of government services, and the role of associations for retarded children.
Most of my time was spent talking to experts and visiting both residential and community facilities for the retarded, and these are the things I primarily want to show and tell about.
I found that in spite of differences in size of countries, differences in economics, and cultural differences, the countries with the best and most developed programs had several things in common: Laws spelled out who should serve the mentally retarded and how. There was a strong, well organized department or office of mental retardation, and the countries were divided into regions. Key staff in each region were responsible for development of complete services. And there was a well-developed staff training program, usually 3 years in length.
I found that the philosophy was different, too. And this can best be expressed by the words of Bengt Nirje, secretary general for the Swedish National Association for Mentally Retarded. He said, "The key is trying to achieve the same good standard of life for the retarded as we want for people who live in the general society. Our aim is to create the conditions of life as similar or the same as for the rest of the population. You have to do it for human dignity and human decency."
The facilities were of a variety of types and in the first country I visited—Holland—I found this day activity center that was started by a non-profit organization of parents. It operates 6 days a week, 8:30 AM to 5:30 PM—much longer than the centers in our country. The children received two meals at the center, and a doctor visits twice a week to give attention to the children's medical needs.
This center is a closely coordinated part of the total program. Government representatives serve on its Board of Directors, thereby not only upholding high standards, but taking an active part in center operation.
Although the building itself is not considered ideal, the steep stairs are even looked upon as a training device.
Transportation to and from the center is furnished by the American Red Cross.
And we can see here examples of an active, energetic staff who have chosen this field as a career; and after three years of training, know how to work with these young mentally retarded. Their program includes group activities and games, toilet training, learning to feed themselves, recreation programs and, of course, a observation and diagnostic service.
Workshops, on the other hand, in Norway, Holland and Denmark, seem more work oriented and provide for many, long term employment. Industrial contracts provide most of the work in these shops.
And in The Hague, there are 650 retarded enrolled in a program that encompasses several buildings.
I visited a special workshop in Slough in England, where severely retarded are trained to take their place in the community. This center is unique in the sense of providing social and industrial training in a residential setting. But an important part of the plan is to discover the best training methods for severely retarded, ages 16-26.
A versatile industrial training program is provided to discover the most suitable work for each trainee in terms of his own individual needs and abilities. And as you look at these people you'll see that they are really quite retarded, but with individualized training they are producing small parts on subcontract with industry. They have used assembly line techniques which have been adapted very well to a program of this type for the rather severely mentally retarded.
Here in The Hague, they have found that they should use a variety of contracts so that they don't become too dependent on any one industry. If they lose one contract, the workshop does not close down.
One of their biggest activities was manufacturing tennis shoes. And this boy who is both cerebral palsied and mentally retarded turned out hundreds of these upper parts of tennis shoes each day. And they also found that they had fewer personnel accidents with the mentally retarded, handicapped people.
Besides the tennis shoe manufacturing operation and the workshops in The Hague, they had television assembly sub-shops, and some of the, again, severely retarded, it was found, could do quite complicated TV wiring. True they used peg boards and color guides and had to be carefully trained, but they did do an excellent job.
Dr. Spire, who is in charge of Mental Retardation Services for The Hague, has said that mostly with the mentally handicapped we look at their negative points and consider these first. "There exists a strong under-evaluation of the sub-normal for the very reason that we look at this negative side, and not at his potential."
And in Holland they've found that experience has taught them that surprising results can be obtained with even the low-grade retarded in sheltered workshops when they are treated properly and put to work effectively.
Assembling upper carriages of typewriters, some people might only put in one bolt. Of course all of this work is very carefully inspected, and the factories would have a factory representative right in the workshop to follow the procedures, to inspect the work periodically, and to be sure that it was right. These people are paid on a piece-work basis and work a good, full day, 7 or 8 hours, and then, of course, go back home.
Some of the activities I saw were similar to those done in this country, the major difference probably being that these people were adults, they expected to work as adults, and they expected to put in a good full day's work.
After leaving these workshops, I visited a community sheltered living unit for the retarded. Many of these were remodeled mansions, where with professional guidance, recreation, and counseling provided, most of the retarded live and pay their own board and room from earnings out in the community. Again, they leave here; they go out in the community and come back to their own little place.
Now this particular facility is a little bit crowded, and more crowded than they would like to have seen it. But nevertheless there was a place for individual belongings, a garden in the back yard for sitting and recreation, and some of the retarded who couldn't leave the facility to work in the community could work in the kitchen helping to prepare the meals or to clean. They could work on handicraft projects and some of them even did small industrial projects right here in the community living unit.
Dr. Fred Escher of Sheffield, England says that the "aim should be to make the retarded self-sufficient using any facilities in the district available to people in general." He said they must pay for their own keep, and their wages should be those paid to other workers.
And in England they may join sports clubs, and social societies, attend baths, cinemas, theaters, go to public houses and the races, provided only that they conduct themselves satisfactorily.
Dr. Hallvard Vislie, Director of Services for the Retarded in Oslo, Norway places proper living facilities first in a list of four essential needs for the retarded. He said there should be small units for no more than 16 adults or 8 children—2 or 3 persons to a bedroom. Small units mean less confusion, fewer individual personal adjustments, a chance for privacy, and a chance to be an individual.
This particular facility, Grimbocken, located north of Oslo in Norway, serves 120 mentally retarded. It's the largest facility serving the Oslo region, with a population of 400 people—120 in the entire small institution that is built well to fit into the countryside. And this is a remodeled to be closed sanitarium which with private funds has been changed to a facility for the mentally retarded.
In Sweden I asked Bengt Nirje, who has the responsibility for inspecting these various facilities, and whether this person has the authority to do something about the facility, if it doesn't meet standards. And he said under Swedish law, the responsibility is given to an inspector general who can close down any facility that does not come up to standard or is too crowded.
On the other hand, in Minnesota we continue to use these large, crowded, sterile institutions with large wards and insufficient staff—with as many as 104 people to one bedroom, with as few as one person to each 50 staff.
But wherever I went in the European countries, I saw facilities more like this, these small buildings in Copenhagen, a new institution for children, with no more than 8 children to a unit, with a living room and bedrooms, play rooms, and small dining rooms, and again sufficient staff.
And many of these retarded left the institution daily to go out into the community to kindergarten programs or school programs, but by having these small units and these small facilities, we are not adding on to the already existent problem of the mentally retarded. There is a place for personal belongings, and there is enough staff to substitute for parents when the parents can not take care of the mentally retarded person. Certainly the Scandinavian decoration and furniture lent a lot to these facilities.
And this scene in England where profoundly retarded were given, what I would call, really good hospital care, and although England does not, in my opinion, have the well developed facilities of the Scandinavian countries, they did have adequate buildings and adequate staff to meet the needs of the mentally retarded.
I feel that we can bridge the gap between our poor programs of custody and the individual programs of care and training that I saw on my trip. Our main task is to use good judgment and common sense and to follow the lead, especially, of the Scandinavian countries which provide not warehousing, but the only kind of care that will work—humane and individual care.
The facilities have to be adapted to the individuals rather than trying to adapt the individual to the facility. And you see that in these rooms you'll always see sufficient staff, a lot of furniture and furnishings.
You'll find that there are specially created physical therapy, equipment, and sometimes it seems that some of the retarded they had were younger than we take in our facilities, but this seems to make sense because we should meet the needs of the retarded when the parents can no longer take care of them in their own home. But enough staff to give individual loving care to help the young children develop.
And then, of course, besides the facilities for the younger children as they grow older, I found plentiful education facilities and recreation facilities. And although rooms like this one are small, they are very homey.
And here we see scenes in a Swedish institution—and note again the plentiful staff, probably about one staff for each four children in the facility. Their individual needs are being met; they're being helped to develop. They are fed by people who have had, again, 3 years of expert training.
Small facilities were the key to these programs. And it doesn't cost very much more to provide comfortable rooms with nice beds, and colorful bedspreads.
I visited a brand new facility in Sweden which is being developed for 350 retarded. And in this they have a swimming pool, which is regarded as a therapeutic measure. It is not a luxury. But, here the retarded can be worked and helped.
You'll find that many of the scenes are devoid of patients because it was the Easter Holiday when I was in most of these countries.
A little bit later we'll see some more scenes of Minnesota institutions so that there is such a stark difference between these and the facilities in, not only Minnesota, but the rest of the United States.
Somehow, in Minnesota, and other states in the nation, we've been able to plan and construct institutions designed to cause severe and detrimental institutionalization of the mentally retarded. Our success rate with our mentally retarded is so very much lower than it is in these other countries.
And these adult women, who are enjoying a holiday in their own building doing various kinds of crafts will, on regular work days, go to the work occupation center of the institution, where they are kept busy and are paid according to their ability, but these are people who need residential care.
At no place did I see bare walls. There was a plentiful supply of potted plants, rugs, pictures, bookcases, chairs, a place for personal belongings, reminders of one's family. Drapes on the walls, very friendly surrounding.
And this shows very well a dining room for 16 with a serving kitchen in the foreground, in the Livy Mosgard Institution in Copenhagen. And this building is for girls who are getting ready to leave the institution where they learn independent living.
In some buildings I saw we could probably put in Minnesota 150 mentally retarded and they would have 16 to a building.
This shows a plan of a building in Sweden, a new institution where both children and adults are served, with the children on one half of the institution and the adults on the other.
In Sweden, with 350 in this facility, it never seems crowded, again, with so very few people.
Country after country I found is planning and building. They choose to give their handicapped their share of the abundance of their affluent societies. And if the story is told about our retarded programs, I believe that our citizens, also, will choose to provide the right care and to share with those who alone can't make the grade.
These are new buildings in Sweden at this institution for 350. One story buildings, which do resemble homes; the kind of facility in which we would like to raise our own family, certainly. Beautiful grounds set in the countryside.
But here in Minnesota, when these scenes were filmed, we find crowded conditions, many to a ward. And it is been said that we provide herd care and warehousing for our retarded.
And when we provide this kind of facility and program, aren't we asking our institution staff to do an impossible task? We are compounding the problem and we are creating mass misery. How can these retarded ever develop as individuals when they're not treated as individuals?
These are the children of our friends, our neighbors, and our relatives. There is no place for personal belongings, no place for pictures on the walls, and this probably represents the worse concept of an institution. And these conditions still exist for hundreds and hundreds of our mentally retarded in Minnesota.
Use of the large dormitories and day rooms and dining rooms, and lack of programs, cause severe and detrimental institutionalization for the mentally retarded. Large buildings and groupings of large numbers of retarded can at least double the problems the institution residents.
Proper planning and utilization can not only stabilize the number who need institutional care, but can also create a wholesome and productive living atmosphere for those who do need long term care. We need to provide dignity and comfort for the many patients who are now living miserable and degrading lives.
And again in Sweden, they have found a way to meet the needs of the retarded. They do it in small buildings, with individualized care, 2 or 3 to a bedroom with a place for personal belongings.
Are the Swedes more compassionate? Are we unable to understand the importance of each individual? Just what is the difference?
Food is brought in to each individual cottage and served 3 times a day from the serving kitchen. Children who can benefit from kindergarten or day activity center services can receive it in the institution.
Our citizens, I feel, are unaware for the most part that conditions like these we're seeing now exist, and I'm confident that once they do know, they too will insist upon improvements.
This building is the end of the line for many ambulatory retarded. Most of them have moved from building to building as they grew older, without programming. About 100 men and boys live here, if we can call it that.
This can only be termed again, herd care. These people are sedated, drugged, watched, and they have no hope for the future under our present plan.
This building looks fairly solid, and it is, but there is one staff person in charge of 30 or 40 people. He can not even keep them dry, or keep their shoes on, much less offer them any program.
Our retarded are not more retarded than the retarded you've seen in scenes from the other countries, but they look retarded and we would too if we were living in this kind of condition.
And yet these scenes in England show what is being done with their severely and profoundly retarded. These men are well dressed, they wear shoes and they're given individualized care and program.
Those who are able attend activities away from their building or are occupied in the work center, as we'll see later. They all wear their suit coats during the day—almost all of them—there are drapes on the windows, comfortable chairs and they have shoes.
This is a scene of a building in Sweden being constructed for the work center and this is one of the major differences I saw, that each institution had these work centers. And this will later be completely outfitted and staffed, and here retarded will work within the institution.
Even older converted buildings can also have a human quality with careful planning. The use of colorful corridors and plants make these look not like institutions, but like somebody's home.
In Minnesota, overcrowded staff try to provide recreation, but with so many patients and so few staff, little can be done. Children grow to adults, beautiful children, lovable children, and they're left unloved and lonely. These children will be moved from building to building as they grow older. With insufficient program, they'll get worse.
And I want you to look especially carefully at the little girl in the far corner. This in my opinion represents the saddest picture that I think I've ever seen in a state institution. For the lack of human warmth, she's huddled up against the cold brick wall, and this is the only comfort she gets so often day in and day out.
Dr. Vislie from Norway lists four important things that the retarded need—living, work, training and education, recreation and treatment. And aren't these the things that we all want and need?
Busy and active lives are a part of these institutions in the Scandinavian countries. There's enough staff to give individualized physical therapy treatment, adequate physical therapists to carry on an active program with special equipment, and adequate space devoted to this particular physical therapy program.
The staff is here feeding the noon meal to these young boys—they know how to do it. Toilet training is important, too.
But look around again at the comfortable conditions, the comfortable surroundings. The bedrooms, the privacy, the way that wood is used so very effectively in decorating the walls. So often, in our Minnesota institutions, we use ceramic tile and stainless steel as a substitute for program and staff training.
This institution in Norway with 250 residents, there is almost an equal number of staff.
Although education programs are good in the institutions, I was particularly impressed with the residential work centers. And we'll see these a little bit later.
I found though that, the education programs served most of the retarded who were of school age in the institutions, and they went for a full school day. And so often we find in Minnesota that the children might only go for an hour and a half.
Here we see retarded men, really quite severely retarded, who are making floor mats and paper bags, in a work center in England.
And again they had severely—and I suppose some that might be classified as profoundly retarded--making kindling by chopping wood in small pieces.
They've taken railroad ties, cut them into sections and then they're split on metal pegs in the workbenches by striking them on top with a wooden mallet. And this way people do not injure themselves.
And the women are occupied sewing, weaving, whatever women do. They're paid on a piece basis and when they finish their work they go back to their buildings happy—have their dinner, a recreation program and spend a restful night.
In comparison, so often in our Minnesota institutions, the rate of drug or medication is increased at night so that the mentally retarded will sleep and can be cared for by only one staff person.
And these young people in a Norwegian institution are assembling suspenders on subcontract with industry. And these small buildings you see are, again, to house no more than 16 mentally retarded.
The school programs have been expanded so that all of the retarded are included in them.
A little while, in a few minutes, you'll see some scenes taken in the High School for Training of Personnel in Denmark. This is actually a post high school 3 year program to train the career oriented people to work with the mentally retarded. But this is certainly a key to a good program.
Physical education formed a major portion of the program for the adults in the institutions. And on more of an individualized basis, wherever I went, there was adequate space, and certainly no overcrowding.
These are the only barefoot children I saw in my entire trip and they had their shoes off during their exercise class and program.
And this was in England where the groups tended to be somewhat larger than in the Scandinavian countries, but nevertheless the program seemed very adequate. And it was geared toward making the individual retarded very productive as persons.
In Minnesota, less than 50% of the retarded are receiving special education. But here in Denmark at the High School for Training of Personnel, people are developing… they are learning how to care for the retarded. They will become experts and this is their chosen career. You notice that they're young, sort of college age students, they're energetic, this is what they want to do, and this is what they'll do during their entire lifetime.
These countries, I found, regard service for the retarded as a right, not charity. And the retarded in these countries were treated as individuals. They were not grouped and herded as so often they are in our countries.
In this 5 weeks I saw no barefooted, naked, or bruised patients. The government, the people, has for many years recognized and carried out their responsibilities.
And still, we struggle on, looking for the answers. It's strange and sad indeed that a few thousand miles away—a several hours trip by jet airliner—countries we call the "old countries" have found the answers while we are still seeking.
The time is come to bridge the gap, to import the experience and ideas of these experts, the people in the old countries. If this is to be done, in order to benefit our young retarded, we must do it now, or thousands more retarded children will grow to adulthood without the good programming, living, and training, which is their birthright.