Ladies and Gentlemen,

Renate Walthes

15 years have passed since I have presented my first paper on early intervention at the ICEVI-Congress in Würzburg, and so it is a great pleasure and honour for me to offer you again some of my ideas concerning early intervention for children with visual impairments.

The first time I was asked to say some introductory words and give an overall view on the situation and the purpose of early intervention. Today, however, my job is another one. Today I am supposed to develop some provoking theses, cause protest and discussion. On the one hand this is something that suits me. Particularly while giving lectures to my students I generally avoid to impart seemingly safe knowledge. On the contrary, I tend to question it, scrutinise facts as to their interests and theories behind, and to accept no hasty certainties and solutions. Since when I see that future teachers do not take programmes and concepts as given facts, but are prepared to question them, looking for those conceptions of men which induce these concepts, only then are they able to develop their own teaching concepts, which are very important in this profession. On the other hand, as soon as I am explicitly asked to provoke, as Heather Mason has so kindly done, I realise that this is not so easy. What of all the things I could and would like to say are provocative in a positive sense? I mean, are they made up in a way that everybody will understand what I am trying to say, and are Mrs Marilda Bruno from Brazil or Mr Nurit Neustadt from Israel able to give answers to them. This is not an easy job, but a really exciting challenge for which I would like to thank the programme committee and in particular Heather Mason.

Now I would like you to participate in my train of thoughts, so you will be able to better understand what I have chosen to talk about.

What kind of criticism and provoking ideas can be expressed in relation to early intervention today? Please, think briefly about what provoking theses you would develop:

Early intervention for children with visual impairments is an almost extinct field, at least in those nations that have devoted themselves to reproductive medicine and genetic technology, or
Early intervention for children with visual impairments raises more problems than solutions, or
The quality of the work in early intervention is too much based on the so-called single disability, that is blindness and visual impairment, and thus unable to deal with the increasing complex impairments, or
A family-oriented early intervention is something being claimed but too seldom followed, something that can also be applied to trans-disciplinary work, or
Despite intensive studies and the exceptional work of some people the standard of low vision early intervention for children with multiple disabilities still is relatively poor today, or
Our early intervention concepts are too much based on the standards and positions of those who see and do not meet the needs of the children who are born blind, visually impaired or multiply disabled, or
It would be presumptuous to say that there is something like a homogenous early intervention, or
There are more differences than things in common when it comes to the objectives of early intervention, or
The effects of early intervention are not based on measures which are specifically visual impairment-oriented, or
We have, at least in the so-called first world a highly developed early intervention system, but at the same time a growing number of more disadvantaged and multiply disabled children – is there a connection?
Or, or, or...

Which of these statements would you choose? Or have I left out anything decisive? Anyway, what I did realise is that I am asking these questions from the perspective from the culture I am living in. In those countries where children with disabilities have barely the chance to survive most of these questions are not being asked at all. Rather would it be important to have institutions offering early intervention in the first place, regardless of having good or bad concepts, of being based on single or multiple disabilities.

Therefore, I decided to start with one of the basic questions, which is: are we able to reach some kind of agreement in the first place, when it comes to an early intervention for visually impaired children world-wide? Is early intervention for children with visual impairments a homogenous concept, and what is this homogeneity all about? Is the fact that children are welcome to this world and being prepared to live in it that defines the homogeneity? Is the purpose of early intervention education and socialisation, or de-culturalisation?

I think you will agree with me on this abstract level, but if you look at the norms, values and different styles of education, you will also notice considerable differences. In some cultures children simply live with their extended families, in others children in the first 5-6 years are given quite a lot of freedom to develop their own personality, with no interference whatsoever, except for safety reasons. Furthermore, there are cultures, in which educational, even ‘drill’ processes begin at a very early stage, and there are cultures in which the child mortality rate is so high that actually nothing is expected from them until they reach the age of five. What does it mean to be a child in China considering the reduction to a one-child-family, to be a child in South America with seven brothers and sisters in a family consisting of 30 members, or to be a child in a typically European-American father-mother-with-two children-family, or in an African tribe with a high HIV rate and a growing mortality of the adults. De-culturalisation is an abstract concept, childhood today is very different. Can we assume that early intervention is something homogeneous? I don’t think so.

Is childhood or rather visual impairment the unifying factor? Does the fact of acquiring visual impairment mostly at a pre-natal stage require similar supportive measures everywhere? I think this concept makes us all come together here, makes experts from many countries come together to discuss the necessity and quality of early intervention. Is this concept still true today? Is visual impairment the factor, which makes early intervention comparable? The two following theses will be presented in a more denying sense.

The causes of visual impairment and thus the consequences for the children concerned as to their activities and participation are different world-wide, like it has never been the case before.
In the industrial nations visual impairment of the posterior systems are predominant, that is cerebral and cortical damages caused by premature birth, whereas in African, Asian or South American countries these impairments do not occur very often, but instead damages of the eyes (cataract, glaucoma, infections), or of the front visual lines. The effects of these damages are highly different, since the requirements in these countries are different as well. If these damages are accompanied by malnutrition caused diseases and if the children are living in more agrarian cultures, different measures are necessary than for children with a complex brain damage in a culture which predominantly relies on cognition and intelligence. In the former situation struggle for survival is predominant, then being able to live a life as independent as possible, and later earning one’s living under the circumstances of having no vision or a different vision. As for the children with complex damages everything is focused on achieving the highest level of self-determination possible, and the attempt to understand their behaviour, strategies and needs. To successfully structure a situation with children with cerebral visual impairments (CVI) or complex damages concepts as to everyday life are still missing, sometimes even a differentiated functional assessment. Do these circumstance have something in common in the first place?
Some people may say that what visual impairments have in common is simply to get across to the children, regardless of anterior, posterior or complex damages, a world which is mostly visually structured and thus unsuitable for their way of learning. Today information is based on visuality, more than ever before. It even can be assumed that people today have to process as much information in one month as people did at the beginning of the 20^th century during a lifetime. Can we now conclude that the more visual the world is structured, the more difficult it is for children with visual impairments to cope in it, and thus the more important is early intervention? Or is it rather as follows?
Our world, particularly the highly technical so-called First World is so much focused on visuality, so much dependent on visual contexts that it does not offer structures or patterns whatsoever to people with a different perception. The more and more exclusive the references to visual and optical contexts, the more they are unsuitable for visual impairment, and for the integration of perception in general. If the statement is correct that in the era of information people are processing as much information in one month as people did at the beginning of the last century during a lifetime, then the increase of phenomena such as cortical visual impairments, cerebral caused peculiarities, which we call perceptive disturbances must be understood as a response to a construction of reality which offers less and less perspectives of coping. Since early intervention deals with offering possibilities to unanimously designing the world under differently perceived circumstances, then it should also assume responsibility of the broadened spectrum of phenomena.
This perspective raises the question as to whether in the future early intervention will be focussing on the traditional target group, that is blind and visually impaired children only, or whether it should also deal with the topic of visual perception and its disturbances.
If it is not childhood and visual impairment that make early intervention a homogenous construct, is it then the institutions of early intervention? Is the fact that there are early intervention facilities with specialists in the fields of early childhood, physiotherapy and education of the visually impaired working on supporting families with a visually impaired child the unifying and homogenous principle? This, I am afraid is not correct either, if we look more closely at the facilities and the methods of early intervention. The whole spectrum of the methods is reflected by the mother who has decided to pass her entire knowledge on to other parents, individuals working in their offices and in mobile early intervention, schools with an early intervention team and big early intervention and centres for diagnostics. Considerable differences will also be found throughout the world. While some countries consider early intervention as developmental support of the child, and judge an interdisciplinary exchange and coordination of the measures already as an improvement, others see early intervention primarily as cooperation with the parents and support of the family. Still others attach great value to the development of a social network, focussing on representation and empowerment
More than ever before, early intervention proves to be a patchwork, some kind of crazy quilt with no comparable standards and references whatsoever.
But now I would like to concentrate on another issue and return to the question I have asked at the beginning of my speech. Could it be that our early intervention despite all efforts is nevertheless predominantly based on the standards and positions of those who see and therefore does not sufficiently meet the needs of the children who are born blind, visually impaired or multiply disabled?

One phrase by Kay Ferrell from the programme ‘Reach Out and Teach’ was really important and useful for my work in early intervention. Here is more or less what she said: It is neither fair nor useful to compare the development of visually impaired children with that of seeing children. Not only was this phrase important for me to classify the outcomes of the development tests, it was most of all important because by discussing the topic of differences in development Ferrell also discussed the differences in dealing with the environment. I would like to give you an example from the beginning of my early intervention work. One of my first activities which I did together with some of my students, was a winter holiday with parents and their 5-6 years old children. Elementary experiences with snow, sledge riding, skating were part of the programme, as were cross-country and alpine skiing. For documentary purposes and as video feedback for the students I had a video camera, which I used as often as possible. This camera was very popular with the children, be it with vision or visually impaired. A blind, six year old boy barely left my side when I used the video cam. I had also brought a camera that was carefully inspected as well. The following discussion came about:

He: You know, it’s really a shame I can’t take pictures. I would love to do so.

I: Why shouldn’t you, let’s give it a try?

He: But how?

I: Well, that’s how it could work: If you want to take a picture of something, look at it carefully first – I mean with your hands – and then you take the camera, hold it near the object and make the photo. When the picture is developed your mother, I or your friend will tell you what it shows.

He: Yes, that sounds good. First I’d like to take a picture from the air.

I. That’s not possible, you can’t take a picture from the air, because you can’t see the air,

- and, already being in trouble I told him,

You can only take a picture of things you can feel and touch.

He: Then I’d like to take a picture of the wind.

I: Ulrich, you can’t take a picture of the wind either, but you can try to take a picture of what the wind is doing with the leaves or a newspaper that is rustling through the streets. Wind is transparent like the air, seeing people cannot see it.

My attempts to explain went on and on, until the boy was satisfied, but not me.

My Christmas present to the boy was an instant camera. He was as enthusiastic as his parents were surprised, everybody else was shocked. How can you give a camera to a boy unable to see? It meant pure cynicism to many. Not to me, however, I was fascinated by his curiosity, but could not yet tell whether the camera would be completely uninteresting after 24 hours. However, something happened nobody expected.

Ulrich, that is the name of the boy, was, as I mentioned before, very enthusiastic to take pictures with his new camera.

At the same time his mother and father were very much needed for describing and explaining things.

He held the camera directly against a wall: If I take a picture, can you see through it? No, you can’t photograph through a wall. ‘And if I hold it in this direction? Here is a window, you can look through it in the garden. Or, he was standing at the door listening to his friends on a swing, which was behind the house. Can I take a picture of them now? No, there’s the corner with the water butt in front of it, it won’t work. Contexts the parents thought were already known to him, became important again. Why can you see through a window but not through a wall, both are solid and firm? Where can I look through a wire and where not? What is it about hearing and seeing? Can seeing people see everything what I hear, or even more? It became clear that he thought when he was in a room others could see him through the wall and the closed door. Seeing meant something almighty to him, something that was unimaginable and beyond his possibilities.

What does this example show?

It shows that we cannot know in advance whether or what something means for somebody.

At the same time it shows that our preconceptions about an object or a person controls our perception, ideas and actions. We think a camera is something completely unsuitable for a blind-born child. Therefore, we would never give it to him. But on the other hand we would not see that in the context Ulrich used it, its purpose became a completely different one. It no longer served as a reflection of reality, but became a medium to learn something about the perception of those who see.

With the help of the camera Ulrich came closer to what it means to see. His experiences with this medium have broadened and modified his concept of the visual world. As little he can learn how people really see, as little I know about his perception.

What does this mean for the experience, for the development of the self-confidence of a child, if this unimaginable of vision takes on such dimensions? If a child learns again and again that those who see can simply do everything – I, however, almost nothing. What about the judgement about one’s own skills, if those who see are not interested in them? What do we think they are capable of in terms of experience qualities on the acoustic or kinesthetic level? What kind of strategies are they allowed to develop and keep? What kind of meagre concepts of space do we offer them, compared to the variety of those being discussed today in geography, physics, architecture and space science? What does it mean for the access to the world, the relation between me and the world, if I as a child with a visual impairment have to learn body protection techniques in the orientation and mobility training courses first? How am I supposed to deal with the requirement to be curious about the world, if I have to protect myself from it at the same time? What does space and experience of space mean if I am not able to move independently? What concepts about space do we offer to these children? These are only some examples.

I guess we will develop a variety of programmes and methods just to calm down a bit and feel we have at least done something for the children. This is nothing bad, after all it is all we can do. Since most of us were not born blind or visually impaired we are not able to develop an idea how the world of blind and visually impaired children looks like. They do not have a language of their own as hearing impaired people do. We have to live with our own ideas, preconceptions about being blind, visually impaired or multiply disabled, without ever knowing whether these concepts are right. Thus, to all of us dealing with early intervention it would be useful to say good-bye to the idea that we know exactly what is right and important for a child with a visual impairment. On the contrary, we should admit that we can only deal with blindness and visual impairment in relation to our own ideas and preconceptions. Having once gotten rid of the assumption that we know what is good and right for those children we now would be able to experience them with more curiosity and understanding and to value the variety of their strategies.

This brings me now to the final area of cooperation with the family, with parents and sisters and brothers. I would like to talk about an observation that preoccupies me for quite some years now. But first I have to mention that for 17 years I am regularly conducting parents-children seminars. This means living together and learning from each other for two weeks in a place suitable to families, where neither the interdisciplinary team nor the families are at home. Eight families and nine specialists in early intervention come together spending a very intensive time. The basic principle of our cooperation is that it is the parents who know their children best and who like the sisters and brothers have to be enormously supported as to their judgements and perceptions. Whereas, we as specialists have a minor function, which means our knowledge is required only if the parents wish to. As I say always at the beginning, the course is not about training the child as much as possible, and as we say in German, getting the most out of him or her. This is clearly not what it is about, since when you get the most out of somebody, what is left? If we all think about our childhood and remember when and what we learned, then I think it becomes clear that we learned when it became necessary for our survival, when we could use it immediately, and we leaned at play. This is something that got lost in our affluent society. Today nothing is required which can be used immediately for the community, neither from non-disabled children, let alone from children with disabilities. This makes them hardly learn that what they are doing and who they are is something very important for their social environment. What’s more, the orientation towards therapy has increased to such an extent that the children very often do not know what it means to play, nor do they have the opportunity to learn at play. And what I am observing more and more in the last years is that blind and visually impaired children are very much therapy experienced, they have acquired a high competence in dealing with their parents and that applies to the parents and siblings too. The latter have become real co-therapists. The fact that they are first of all parents and as such have a completely different job than the specialists is in real danger to get totally lost due to the therapy orientation. Many specialists confirm again and again that today it is much easier to cooperate with the parents than it used to be, which makes me think that this is because they have very much acquired the views and concepts of the specialists and therapists. This is something we should change, we should concentrate more on the differences between parents and specialists, not to undermine the role of the parents and tell them they do not see their children correctly, but to point out how necessary their view on the child is and how incomparably unimportant the specialists’ viewpoint. Parents are living with their children, while specialists see them only for a few hours and this again for a few years. It is not them to make the demands on the parents, but the parents to have the right to choose the support and early intervention. This might be appropriate to all cultures, regardless of the position of the specialists. It is all about supporting the parents with their worries and efforts for their children.

The support for the parents or the closely related people of the child with visual impairment is of course again dependant on the respective social situation and the kind of support the parents need. Therefore it might look quite differently from the cultural and inter-cultural perspective. Nevertheless, our common starting point might be indeed early intervention: To strengthen the parents and the closely related people, not to change them. It is not the impairment itself or its functional effects that must be compared, but rather the social responses to the visual impairment. Based on the assumption that disability is an ‘unsuccessful dealing with diversity’ all efforts should be put into positive results. This means to support and strengthen those who can deal with diversity: the parents. The tendency towards an inclusive community (this is analogue to the title of the congress) will fail, if we ignore the differences or accept a single generally valid model. It can and will be work only, if we emphasise and accept diversity. So let us talk about the differences rather than about the common features. Let us describe, discuss and work on those differences which determine our work, thoughts and actions. There is one prerequisite, however: We must accept these differences as legitimate ones. How parents think and act differs necessarily from how experts think and act, as pedagogues from therapists, doctors from shamans. It is our concern about these differences which will bring us forward. In this sense my message for early intervention is: think differently and work together!

Comenius Group, Walthes, R..et.al.: Low Vision in Early Intervention. Pre-Course Materials. Cd-rom 2000

Ferell, K.A. (1985): Reach Out and Teach. American Foundation for the Blind. New York

Hyvärinen, L. (2000): Vision Evaluation of Infants and Children.In: Silverstone, D.S.W.; Lang, M.A. Rosenthal, B.P. Faye, E.E. (Ed.) The Lighthouse Handbook on Vision Impairment and Vision Rehabilitation. Vol 2 pp 799-820 New York: Oxford University Press

Walthes, R.: (2000) Visions and Strategies for the New Century. ICEVI Proceedings. www.icevi-europe.org/cracow2000/walthes.html