Children and Youths with Handicaps and their Parents

The Dynamics of Self-organization and Professional Forms of Help

Autor:in - Volker Schönwiese
Themenbereiche: Selbstbestimmt Leben, Kultur
Textsorte: Referat
Releaseinfo: Meeting of European-Integration-Network (EIN)
Copyright: © Volker Schönwiese 1994

The Dynamics of Self-organization and Professional Forms of Help

Dear Ladies and Gentlemen,

I want to thank you for having invited me to deliver the opening speech here as a member of the Austrian self-help groups for integration. I want to try to formulate some fundamental considerations concerning the topic which I have been asked to speak on this evening.

To work and fight for integration, - or rather for non-segregation, - is a challenge for all of those involved.

The challenge is based on the premise that ideally there is no such thing as partial non-segregation, which can be reduced to individual acts or areas of activity. Non-segregation calls for comprehensive thinking.

This means thinking in structural terms as regards:

  • institutional areas of action;

  • social and political conditions, which manifest themselves in the form of legislature;

  • and daily, collective methods of interpretation and means of acquiring knowledge which constitute handicaps.

Comprehensive thinking also takes the individual actions of handicapped and non-handicapped persons as its point of departure, and of course society's structures as realms of action and individual actions are part of a dynamics which constitutes daily life.

In order to obtain a comprehensive, integral perspective it is also necessary, within the framework of a critical view of individual dimensions of non-segregation, to take two perspectives into account: on the one hand the perspective of the parents (the mothers and fathers), teachers, therapists, physicians etc., i.e. the perspective of adults who are non-handicapped in the customary sense of the word, and on the other hand the perspective of the handicapped children, youths and adults themselves, i.e. of those directly affected. This distinction is not as banal as it might sound, since on a daily, practical level the view and definition of handicap is determined by adult non-handicapped persons in their function as the agents of society's way of thinking, and the differing way of thinking of those directly affected, which is represented in public by self-help groups, is not yet powerful enough to join together the differing perspectives of handicapped and non-handicapped persons in a mutual process which would endow each position with an equal status.

Please allow me to speak with the emotionality of one who is personally affected by these considerations. An attempt to enter into a dialogue without stating my own opinion and representing myself would only lead to misunderstandings. As we know, the prevalent forms of dialogue are not so free from the constrictions of the dominating forces in society as one might want or pretend them to be.

Without attempting an anthropological justification, I operate on the premise that we handicapped persons

  1. have a fundamental right to non-segregation;

  2. have a fundamental right to a self-determined life in which we take on responsiblity for ourselves;

  3. have a fundamental right to the prevention of violence and discrimination against handicapped persons.

Concerning the first point, the aspect of non-segregation, it can be ascertained that during the last decades far-reaching conceptions have been developed. An integrative educational model has begun to establish itself. Apart from more or less slow developments on the professional level, following the tradition of the social movements, handicapped persons and parents have established self-help initiatives which have been fighting for non-segration in all areas of life, for example for integration in the schools within the community. By establishing new conditions, changes are beginning to come about without a change in the system itself having already taken place in the direction of integraton instead of segregation. In Austria for example a law has been passed which gives parents of handicapped children the right to apply for non-segregation in the elementary schools on behalf of their children, which has led to the establishment of a large number of integrative classes. So as to assure this partial success and to continue in the same vein, much work is needed and many new developments must come about.

The third point, concerning the avoidance of violence and discrimination, which is particularly relevant in light of the 'new euthanasia controversy' and open acts of violence against handicapped persons, is dependent to a large extent on the second point, i.e. the right to a self-determined life.

Here I want to develop my argument by citing some concrete examples. Georg Feuser, one of the most committed thinkers in the direction of integration in the schools, names some imperative principles and thus conditions for integrative classroom instruction, i.e. the principle of cooperation directed toward a common object and individualization[1]. I would like to add that this integrative educational concept also requires that the teachers be willing to confront themselves with the actual child in question and not with the images which they might have of handicapped children. People often act towards us handicapped people in reaction to images which do not correspond to the reality of our existence. The shock which parents experience when they have a handicapped child is to a large extent the shock which is produced by images of handicap which are in part completely separate from the reality of the child him- or herself. These images, which more or less turn handicapped people into monsters or alien beings, are not only the images of the parents; they are also conveyed by 'friendly' relatives and acquaintances and especially by professionals in a medically dominated team.

Thus the images of handicapped people fuse with images of their differentness. The image becomes reality. Niedecken has shown that this process can be explained as a kind of phantasm. She writes: "Phantasms are those psychical configurations in which societies unconsciously safeguard their power structures in the individual, making them appear to be unchangeable and natural. They manifest themselves in the form of institutions, which are imparted the aura of eternal necessity."[2]

The unconscious safeguarding of phantasms is effected by engaging emotions, which are turned against handicapped persons. One's own experience of loss and grief as well as one's fear of loss and grief are projected. Fredi Saal - a handicapped person who only escaped euthanasia by the Nazis by chance - recently described it this way: "No, not the handicapped person himself experiences himself as abnormal because of his handicap - he is experienced by the others as abnormal because a whole realm of humanity is rejected, segregated. In this way his existence poses a threat. The point of departure is not the handicapped person, but rather the way in which one experiences oneself. One asks oneself how one would react if one were to become handicapped oneself and transfers the results of such deliberations to the handicapped person. In this way one gets a completely distorted image, because one doesn't see the other person, but rather oneself. This results in paradox behavior: One projects misery onto the other person, and avoids his or her presence for this reason."[3]

The fear of projected misery leads to attempts to ward off fear, to defense mechanisms, which I would describe in the followimg way: Defense mechanisms are the individual, esthetically conveyed reaction of the well internalized burden of the social values of the well-functioning human beings capable of performing.

After all, we live in a society in which performance and education are our citizen's primary duties. This is deeply embedded in our bourgeois-enlightened subconscious and takes on the form of fear or disregard of or sympathy-ridden behavior toward handicapped persons.

I hope that I am not misunderstood. What I say here is not meant to be a reproach, but rather the attempt to describe conditions which can be eliminated by mutual action and non-segregation in the family and the schools and which, within the framework of therapeutic efforts - insofar as such efforts are useful - must be overcome. Self-help groups for the parents of handicapped children or self-help groups for handicapped persons themselves concern themselves with this aspect, whether unconsciously or consciously, to a great extent.

Now I would like to return to my own position. I acknowledge the shock which the families of handicapped children experience as an unavoidable reality of our society. But at the same time I demand unlimited respect for handicapped children and the acknowledgement of the shock which they experience in light of the hostility whichc this society, into which these children have been born, has toward the handicapped. Much of what is diagnosed as a handicap in such handicapped children is a diagnosis of this very shock and its consequences for the biography of the child affected, which in turn is interpreted as a handicap or as deviant behavior.

A remark should be made about the shock which parents experience when they have a handicapped child, namely the fact that the mother is the one who is primarily confronted with the problem. The fathers delegate the problem to their wives. Even if this is not particularly apparent during the early phase of socialization, which is characterized by a close symbiosis between mother and child, it becomes an irreversible problem at the point when the dissolution of symbiosis through play and an extension of the child's realm of experience requires contact with other people. The refusal of most men to take on the same amount of responsibility as the mothers do often leads to limitations in the socialization of handicapped children which are decisive for the lives of these children and have serious consequences[4]. The father as the representative of the patriarchal super-ego of our society and the phantasms which go along with this role often separates himself from the child early on, thus establishing the paradigm for all additional instances of segregation. The mothers are given the responsibility for the development of the child, which is determined by such fantasms. No wonder mothers in this situation often suffer from homicidal and suicidal phantasies and severe feelings of guilt. Niedecken writes: "Society's contract to kill. That is what I would call the situation which the mothers of handicapped children are put into."

This very short analysis suffices to show what I call the 'perversity' of the controversy over euthanasia controversy, those in favor of which want to give the parents and physicians the right to decide whether to kill a handicapped child or not.

What is strange is that despite these problems, the parents, who are most closely involved with the children, are often more capable of subjecting themselves to the process of grief which accompanies the experience of having a handicapped child, especially if they are involved in self-help groups, than the professionals are, for whom the dissolution of defence mechanisms is actually the prerequisitie for carrying out educational or therapeutic measures if they are to have any positive effect. Much of what is viewed as special educational methods or therapy for handicapped children and youths is only the institutionalized attempt to have a healing and normalizing effect on the child in question, whereas initially the goal was to accept the handicapped child's or youth's self-determination and means of articulation. Apart from producing fantasms and making diagnoses, treatment technology becomes a means of perfecting the reality of the persons undergoing such treatment in accordance with society's norms.

The ongoing therapy boom, which keeps coming up with new forms of therapy for handicapped children must be looked at within this context. As a popular Austrian joke goes, one might ask: By the way, what is the newest form of therapy this week? Now that we have a bibliotherapy, a hiking therapy and a darkness therapy, how about the new dolphin therapy. You haven't heard of that one yet? Then buy a plane ticket to Ailat (Israel) or buy a dolphin for your bathtub...[5]

This whole therapy mania is the reason why teachers who do not have any special training, as long as they are good teachers, find it easier to deal with handicapped children better and recognize their normality better than special educationists do, who have to cultivate their defense mechanisms by means of certain rituals rather than doing away with them. Much of what is called therapy can only be comprehended in light of the defense mechanisms of the adults involved.

All of those who aim toward non-segregation must realize that this requires respect for the individuality and self-determination of children, youths and adults. As regards handicapped youths, this means letting them go and acknowledging that they are growing up. This is a problem which so-called 'integrative parents' are confronted with as well. Parents who fight for their children must also realize that at some point their children will start to fight for themselves. Children who live as adults in the homes of their parents - which is a common practice in Austria - certainly don't obtain acknowledgement of their right to self-determination. As we know, the result is that these handicapped persons, who are treated like children, are ultimately committed to homes. Too much protection from the risks of life, whether they be traffic or sexuality, is a form of incapacitation. Refusing to give children the chance to learn to deal with traffic doesn't give them any protection. Not enlightening them as regards sexuality and contraceptives also means not giving them protection, just as sterilization is no form of protection against rape. The only way to protect them is to promote self-determination, which is the product of respect for the autonomous personality of handicapped person, no matter how young or old he or she might be. Recently the mother of a handicapped child who was participating in a discussion of the work group for integration in Vienna pointed this out and referred to the responsibility which newborn children have for their own lives. I hope I don't have to emphasize that self-determination and responsibility for one's own life are concepts which are to be viewed in the context of an intact social environment and that I don't imply putting the responsibility for everything onto the handicapped person.

Respect for the right of children to individuality should motivate parents and other people who are in a position of responsibility towards handicapped children to let them go in the sense of the developmental logic of the dissolution of symbiosis. Otherwise integration will nor work. Cooperation and individualization are the educational principles involved here. Developmentally speaking, mutual respect and the elimination of defense mechanisms in personal relations are absolutely necessary.

I speak from my own experience. I was subjected to segregation in my childhood. I was not put in a special institution, but rather given instruction at home by my parents and teachers. I was what one would call an intelligent handicapped child. Nevertheless, my parents were obsessed with the idea of healing, and this obesession was supported by medical professionals and other professionals. To quote Milani Comparetti, there was a "perverse alliance" between my parents and the medical system. Apart from good and important medical measures, this meant that as a handicapped person I was not accepted as the person I was. I think that I needed many years - and psychoanalysis - so as to learn to deal with this existential devaluation without pointing the finger primarily at my own self. Being "intelligent" also meant being "good,", which in turn meant taking on the responsibility for the grief of my parents and thus the duty to try to reduce their grief. My own grief about the whole thing was covered up by efforts to be good, with the deep-down knowledge that I was to blame for the problem which my family had. Instilling feelings of guilt is still one of the most popular techniques of our society for warding off fear and disciplining other people. Of course those of us handicapped persons who are adults should not in turn put the blame onto others and in doing so help to sustain the predominant conditions by adopting the role of the victims. Playing the role of the victim is not the same as fighting against clichées, behavior and conditions which handicap people.

Thus it should be clear that my description is not intended as an individual reproach, but rather as a description of aspects of our society which I have personally had experience with.

With my personal background, which is more or less the background of most handicapped adults and is often aggravated by the fact that one's educational advancement is restricted by the special educational system, the mutual fight against segregation and violence and for self-determination which is fought by the handicapped or crippled, - as we say so as not to disquise the nature of the dominant system which threatens us, - is unavoidable. The fight against segregative conditions and the fight for the determination of my own place in society is absolutely necessary for the development of my identity.

I agree with the parents of handicapped children that organized self-help is the only political and personal solution for making self-determination possible. This is our goal, to obtain self-determination. This can be defined, in keeping with the American "Independent-Living-Movement,"[6] in the following way: "To live in a self-determined way means to have control over one's own life, having the option to choose between acceptable alternatives which minimize dependency on the decisions of others when it comes to mastering every-day life. This includes the right to manage one's own affairs, to participate in the public life of the community, to adopt any number of social roles and to make decisions without becoming emotionally or physically dependent on others in the process. Independence is a relative concept, the meaning of which everyone must define for himself."

I want to stop here and summarize. In this short talk I have tried to show that in keeping with my comprehensive perspective, 'blind spots' must be detected. In this context more attention must be directed toward the process of coming to terms with our society's defense mechanisms and those employed by individuals. Self-help groups cannot avoid this. The professional system of help for the handicapped has not as yet accepted the definition of the basic problem as stated here. It continues to act on the principle of segregation and defense. In order to present an approach for developing further methods of professional guidance for handicapped persons and their families I would need more than just one more lecture. In any case we must engage in a critical dialogue more extensive than the dialogues which have been carried out in the past if we are interested in development and intgegration.

I thank you for your attention.


Volker Schönwiese: Children and Youths with Handicaps and their Parents - the Dynamics of Self-organization and Professional Forms of Help

Meeting of European-Integration-Network (EIN)

bidok - Volltextbibliothek: Wiederveröffentlichung im Internet

Stand: 27.04.2006

[1] Cf. Georg Feuser, Allgemeine integrative Paedagogik und entwicklungslogische Didaktik. In: Behindertenpaedagogik, I/1989, pg. 4-48.

[2] Dietmut Niedecken: Namenlos. Geistig Behinderte verstehen. Ein Buch für Psychologen und Eltern. Munich (Piper Verlag) 1989, pg. 113.

[3] Fredi Saal, Behinderung = Selbstgelebte Normalitaet. Überlegungen eines Betroffenen. In: Miteinander, I/92, pg. 8.

[4] Cf. Niedecken, pg. 71.

[5] Cf. 'Delphine therapieren Kinder.' In: Profil, 27. Sept. 1993, pg. 97. I quote: "A possible 'source of healing' could be found in the sound waves which are sent out by dolphins, which stimulate the central nervous system and a person's brainwaves, especially those of children, whose brains are still in the process of growth."

[6] Horst Frehe, Thesen zur Assistenzgenossenschaft. In: LOS, no. 26/1990. pg. 37.

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