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Christian Gaedt
„What is a place to live“
"What is a 'place to live'?" - Sociological and Psychological Prerequisites for Life in the Community[1]
Normalisation as Adaptation?
Normalisation has pointed the way in many countries over the past few decades, with its vision of a society where all people, handicapped or not, can live together as citizens with equal worth and equal rights. The progress achieved through this ideal towards the humanisation of living conditions for handicapped people cannot be emphasised enough. But such a vision does not make the practice of it immune to errors or false developments. Today an obvious tendency can be observed that the question of emancipation for the mentally handicapped towards a normal life is being reduced to the question of the optimal way to achieve a superficial adjustment to social norms.
I have no doubts in the great ideals of the normalisation principle. I question some of the consequences in the real life of people with learning disability. I will try to substantiate my doubts with four examples.
1) A residential facility in a suburban community in England is being shut down. The sole reason given is the presence of an adult training center in the direct vicinity, which has led to a high concentration of handicapped people in one area, which violates the principle of normalisation. The adult training center was the place of work and a meeting place for social contacts for many of the residents; many had developed long-term friendships there. "Yes, I have many friends here," said one of the residents, "but I'm not sad because John says that I will find a lot of new friends in our new place." John is the social worker who is planning the move, and the new residential facility is a single-family house in a 'normal' neighbourhood.
2) On a tour of a conceptionally very attractive residential accommodation for the handcapped in a small town in Sweden, I was struck by the extreme cleanliness of one of the apartments. "Ms. K. lived for many years in a large institution," one of the residential care takers answered my question, "she doesn't like to be alone. She is with her friends at the instituion as often as possible. But we offered her a course which should teach her how to deal better with being alone." After a slight pause, she added, "Social contact is often a problem. In Sweden we now have a person 'allocated' to them whenever they wish. This person is called their 'Friend'" I didn't have the chance to find out how this works. To me, it was more important to consider the basic conviction that every deficiency could be compensated for on demand, protected by law.
3) In an English suburb, I had the opportunity to visit a residential facility for young mentally handicapped people with serious behavioral problems. This was a single-family dwelling surrounded by infinite rows of similar dwellings. There were four handicapped residents supervised by 12 care workers. I asked about opportunities for social contact, and was told that each resident was able to travel into the local center often. However, this was only possible if two of the care workers were available, because each of the residents had to be accompanied by two care workers.
4) On visiting a residential facility in Oregon, USA, I noticed that all the residents had an unusually friendly way of greeting newcomers. They introduced themselves, waited until I had told them my name, then asked me where I came from and again politely awaited my response. They remained smiling as I said "Neuerkerode" and they replied "What a nice place". With that, our "totally normal" greeting was complete. The care workers also showed me their "paperwork" during my visit. They were responsible for evaluating social behaviour on innumerable scales. Among them there was a scale for "greeting behaviour". These scales were regularly presented to the psychologist, who then suggested certain steps to take if necessary. This "paperwork" also served as a scientific quality control and were an important criteria for successful negotiations with the creditors.
New Forms of Inhumanity?
What I am attempting to show with these examples is hardly on the level of scandal. These examples are not good enough for headlines in the newspapers. My examples do not point out disgraces of the sort which we have had to experience in connection with large institutions up to the present time. On the contrary, the public would even have difficulty discerning anything wrong or disturbing and the same is possibly true for some experts. The large number of published disgraces in "total institutions" blinds one and makes it difficult to see anything negative in the current situation. It is assumed that with the closing down of "total institutions" every possible form of inhumanity towards the mentally handicapped has been overcome forever. It is the naivety in the comments of those care workers in my examples, the complete absence of scepticism or doubt, which worries me.
In my examples, I think, new and more sophisticated forms of inhumanity are revealed. Is it not contradictory to the emancipatory side of the normalisation principle when handicapped people's social needs become insignificant in the face of theoretically well founded planned targets, when autonomy withers away in a social vacuum, when they are emotionally and cognitively overtaxed and their inability becomes their most memorable experience, or when relationships are limited to professional contacts? Normalisation is at risk of becoming "normation". I am not certain that later generations won't refer to "normalisation artifacts" in analogy to the current "institutional artifacts" in order to point out certain false developments.
Measures of the Quality of Life and Value Relativity
In order to recognise measures of quality of life, we need a scale of very high sensitivity. We need to define violations of human dignity and denial of opportunities for free development, not only as a comparison with the situation in "total institutions". For this, we need a definition of the quality of life which is more than the absence of abasement. If living conditions are to be normalised, it must be known what "normal" is, normal for a particular person with a particular form of mental handicap. The scale must be able to recognize and evaluate the special situtation created by the mental handicap, and to test the social environment to see whether it is appropriate for meeting the special needs of a person.
In attempting to put the normalisation principle into practice, one problem will quickly arise which in our society is either considered finally solved or obsolete and unnecessary. This problem concerns the personal meaning of life and the question of a philosophy of life.
Again, I will illustrate what I mean with an example.
I was visiting a young man, Hans, living in an anthroposophical residential facility in Germany. The facility used to be a hotel and is located in a woods approximately two miles outside the nearest community. In this facility there are about twenty persons with mental handicap living with a family and several care workers. It was the young man's birthday and, as apresent, he had requested the (piano version) sheet music to Mozart's "Magic Flute". I had come to bring him this gift. He greeted me at the door, the careworkers who happened to be near greeted me as well, but remained in the background. As I was visiting this facility for the first time, I asked him to show me around the individual buildings. He proved to be very well-informed. He led me through the facility calmly and confidently. He was definitely able to identify with his home. It was afternoon on a working day, but the workshops were empty. Hans, explained that a public violin concert would be held that evening in a church in the town. Everyone who wanted to attend it was supposed to be well-rested, so they didn't need to work that afternoon. The soloist was also acquainted with the facility and would be staying a ew days as a guest. I asked about contacts to the towns people. He named a few; one was the pharmacist who had be quested to the facility a recipe to be used in the production of scents, for example bath oils, which were made in the facility's workshop. He mentioned a piano teacher who came to give lessons in the assembly hall once a week. They were only a few contacts, but for Hans, they were very significant. He said he had a close friend, with whom he shared his room, and several other friends, male and female, with whom he often played games in the evenings. Some of them, like himself, could play the lyre, and they sat together nearly every evening to make music.
Finally, I gave him the birthday present, the "Magic Flute" music. He was obviously very pleased. I couldn't really understand his request. What was he going to do with it? I knew his life history and his medical records very well, he was undoubtedly mentally handicapped. In the end, I simply asked him to play something for me. Confidently and proudly he unpacked his lyre, opened the sheet music I had just given him, found a piece he told me was relatively simple, and began to play. Occasionally he paused to give me an account of the characters involved in the music or the theme of the music. He played slowly, with intense concentration; he was obviously having difficulty reading the music because of his extreme short-sightedness. I was impressed by the respectful way he had handled his lyre, his careful opening of the sheet music, and the dignified way he played: the music itself, and not only the making of it, were very important to him. All this was pleasing and surprising to me.
I would like to be able to leave my impression at that. But my professional interests compel me to ask what it was that so impressed me with Hans, what had made it possible for him to develop this way. I know that I will never completely understand it. And I also know that this phenomenon cannot be analysed scientifically. The thing that impressed me could not be recorded in the "quality of life" research. I will try to put it into words: Hans is a special personality, a personality which has found its inner center. And completely inseperable from this statement is the fact that Hans had found his niche in a special community, a community which has given him the chance to find his meaning in life.
I think that no one here would disagree that the residential facility I have just described does not correspond to the principle of integration and normalisation, as practiced with success, for example in the Scandinavian countries. But is Hans therefore living "abnormally" and is he unintegrated? Which norms and values does this special community embody to enable him to develop this way? How does his lifestyle differ from the"normal" average? When normalisation as a principle is being discussed, these questions are often ignored. It is always assumed that the central values and corresponding lifestyle of the community as a whole - at least as regards the handicapped - provides an overall consensus of how to live. This (to me) is a false assumption, and my example illustrates this. My example shows a pluralistic society which allows the existence of a community where people who have not oriented their live on the predominating norms have found each other. No longer are we dealing with a simple "right" r "wrong", but with the possibility to be different, to think and live differently.
Thus we must not only seek criteria which will help us to meet the humanistic expectations of the normalisation concept. In working with the handicapped we must also make efforts to have these concepts remain tolerant to various lifestyles. In a pluralistic society, there is a wide variety of lifestyles and philosophies and we must protect this variety from the ever-stronger pressure to conform, also for handicapped citizens.
With my example, I did want to call attention to the relationship between the personal meaning of life and a philosophical orientation of the social environment. If we are going to consider what "places to live" should look like, for the handicapped and for the non-handicapped as well, this is a crucial question.
I will devote the rest of my talk to the two other questions raised: 1) what special adverse circumstances can be expected if a person with mental handicap develops in our society and 2) regarding these special circumstances, which prerequisites must then be given to enable a successful normalisation and integration.
Increased Emotional Vulnerability
Mental handicap is a phenomenon with many facets. It results in peculiarities in human personality which we would nowadays prefer to repress. These facts do not fit well to the wide spread superficial understanding of the concept of equality. I am aware of the possible risk of discrimination, but especially when considering equal rights, i.e. primarily equal opportunity, it is very important to see the differences. Otherwise it is impossible to compensate the disadvantages. For me, there are two aspects which illustrate the exceptional features of people with mental handicap. One is the limited capacity for social adaptation on account of a defeciency in acquiring skills and abilities necessary for it and the other is a particular emotional vulnerability. I will first discuss the latter aspect.
Nowadays it is assumed that the most important psychological structures and functions are developed or become mature through the child's early interplay with the most significant people in its life. Here the basis for healthy human development is formed, the main goal of which is to ensure an autonomous life within a given society. From the first day of its life, the infant takes the initiative in this developmental process and begins to organise an environment conducive to its development by influencing the people it is closest to.
But regarding the various handicaps a mentally handicapped child is confronted with, it cannot be expected that this decisive early phase of life will be without interference. Even under very favourable conditions, a mentally handicapped child hardly has the chance to develop normally. This is often not only the result of the actual organic damage, which leads to a considerable disruption of the child's interaction with its environment. Handicapped children are also exposed to a pattern of socialisation different from normal children. In this case, the parent-child relationship differs in one very decisive point to that of a non-handicapped child: the parent-child interaction is dominated by the parents (Levitas and Gilson, 1988). At first, the reason for this is the handicap itself; later this interactive style becomes fixed as a particular pattern of socialisation. Thus the handicapped child hardly has a chance to be the originator of changes in his/her life experiences and so it is deprived of the satisfactory experience of growing autonomy. This makes it more difficult for the child to build up narcissistic reserves for the development of a stale sense of self-esteem. Narcissistic confirmation can only be given to the child by the parents, which reinforces its dependence from them even further. This unfavourable pattern of interaction for handicapped children will become more fixed in later life through pedagogical and therapeutic measures which are primarily oriented towards cognitive performance. Under these conditions progress can certainly be made in terms of motor and cognitive skills, but autonomy based on self-esteem will more likely be inhibited. This distorted form of interaction therefore leads to a weakening of the personality structures, which is referred to by Levitas and Gilson as the "secondary psycho-social deficit". The most important characteristic of this distorted interaction is an immature structure of the "self". The tendency is towards a readiness to be dependent; self-experience is transmitted through the significant contact persons. Levitas and Gilson therefore also refer to a "mediated self". Additionally, under pressre, the strength of the contact person is sued to stabilize the handicapped child's own ego functions. The contact person is required as a kind of "auxilliary ego". Along with the immature self there is also a primitive superego, an omnipotent ego-ideal and inadequate self-control. A personality moulded under these conditions characteristically stops developing in adolescence.
For example, in later life these people overreact to any separation, they remain basically dependent on dominant contact persons,they often refuse to co-operate if asked to act on their own initiative, they have pronounced problems with self-esteem, and are therefore oversensitive to repudiatiation, they require a great deal of emotional support if they are confronted with new ideas or tasks, and react with panic if they feel overtaxed. It is important to note that in stress situations these personalities can only use their cognitive abilities to a limited extent, due to this psychological vulnerability. They are then not only emotionally imbalanced, but their intelligence functions are also impaired.
Such problems are certainly not characteristic for every person with mental handicap. And even if they are existent, they may remain latent. Whether they manifest themselves and make life more difficult depends primarily on the social environment. It depends whether this environment stimulates their abilities, which is desirable and fosters development, or whether it overstimulates. Often attempts at integration fail not mainly because the cognitive ability was overtaxed, but because in confronting with average social situations, the emotional side becomes overburdened. Under conditions which are "normal", but for certain people already unfavourable, these structural vulnerabilities become manifest psychological disturbances. This emotional vulnerability shows that a mental handicap is more than can be expressed by the English term "learning disability".