Renate Walthes
15 years have
passed since I 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
speak, I presented an introduction and gave 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 provocative hypothesis, cause protest and
discussion. On the one hand this is something that suits me. Particularly while
giving lectures to my students I generally avoid giving seemingly safe
knowledge. On the contrary, I tend to question it, scrutinise facts as to their
interests and theories behind them, and to accept no hasty certainties and
solutions. It is only when I see that trainee teachers do not take programmes
and concepts as given facts, but are prepared to question them, looking for the
underlying assumptions of the men who establish these concepts that I feel that
they are able to develop their own teaching ideas, which 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 find 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 Mrs. 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
provocative ideas can be expressed in relation to early intervention
today? Please, think briefly about what provocative thesis you would develop.
Here are some of my suggestions:
1) Early intervention for children with visual impairments is an
almost endangered activity, at least in those nations that have devoted
themselves to reproductive medicine and genetic technology.
2) Early intervention for children with visual impairments raises
more problems than solutions.
3) The quality of the work in early intervention is too closely
focused on the so-called single disability, that is blindness and visual
impairment, and thus is unable to deal with the increasing complexity of
impairments.
4) Family-oriented early intervention is an approach which is often
espoused but less often achieved, the same is true when it comes to
trans-disciplinary work.
5) Despite intensive studies and the exceptional work of some
people the standard of low vision services in early intervention for children
with multiple disabilities is still relatively poor.
6) Our early intervention concepts are too closely based on the
standards and perspectives of those who see and do not meet the needs of the
children who are born blind, visually impaired or multiply disabled.
7) It would be errornous to say that there is something like a
homogenous early intervention.
8) There are more differences than similarities
in common when it comes to the objectives of early intervention.
9) We have, at least in the so-called first world a highly developed
early intervention system, but at the same time are we creating a growing
number of more disadvantaged and multiply disabled children f.e. CVI is
there a connection.
Which of these statements would you choose? Have I left out anything
vital? Anyway, what
I did realise is that I am asking these questions from the perspective of 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.
Parents are more concerned about gaining access to any kind of institution
offering early learning regardless of whether it has an appropriate theoretical
standpoint or whether it caters for a single or a variety of disabilities.
Raising these questions does not mean I have the answers. I would like to focus on three topics.
I have decided to start with one of the basic questions, which is “Are
we able to reach worldwide agreement
when it comes to early intervention for visually impaired children?
Is early intervention for children with visual impairments a homogenous
concept, and what is this homogeneity all about? Is it the fact that
children are welcomed into the world and need to be prepared for living 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 around the world. In some cultures children are shaped
by the influences of the extended
family, 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
other than survival is expected from children until they reach the age of five.
What does it mean to be a child in China given the introduction of one-child
families; 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 varied. Can we assume that early
intervention is something homogeneous? I don’t think so.
Is visual impairment the unifying factor? Does the fact that the child
has acquired a visual impairment mean that he or she requires similar support
measures everywhere? I think this is the concept that brings us all together
here and unites experts from many countries to discuss the necessity for and
quality of early intervention. Is this concept still true today? Should visual
impairment be the key factor that determines the form of early intervention?
The two theses which follow make the contradictions more apparent:
1. The causes of visual impairment and their
consequences on children’s development and
participation differ across the world more than ever before. In the
industrial nations concerns about impairment of the posterior visual systems
are predominant (eg. cerebral and cortical visual impairment arising from
premature birth). In African, Asian or South American countries these
impairments are less common and concerns focus on damages to the eyes or the
anterior pathways. (eg. cataract, glaucoma, infections). The effects of these
impairments are very different and the needs of the children in these countries
are different as well. If impairments are related to malnutrition and the
children live in agrarian economies than the responses required are going to be
different from those for children with complex brain damage who live in
cultures which rely on cognition and intelligence. In the former situation
struggle for survival rather than self reliance is the main concern. For children with complex needs in industrial
societies intervention is focused on achieving the highest level of
self-determination possible, and the attempt to understand their behaviour,
strategies and needs. Do these circumstances have anything in common?
2. 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
impairments, a world which is mostly visually structured and thus unsuitable
for their way of learning. Today information is based on vision, more than ever
before. It is even argued that people today have to process as much information
in one month as people did at the beginning of the 20th 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 Countries is so
much focused on visibility, so much dependent on visual contexts that it does
not offer structures or patterns 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, perceptual difficulties arising from cerebral lesion, must be
understood as a response to a construction of reality which offers less and
less prospects for coping. This perspective raises the question as to whether
in the future early intervention will be focusing on the traditional target
group, that is blind and visually impaired children, or whether it should also
deal with the topic of visual perception and its disturbances.
3. 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 to support
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. While some countries consider
early intervention to be about supporting the development of the child, others
see early intervention to be about supporting the development of the child,
others see early intervention as primarily concerned with support for the
parents and 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 asked at the beginning of my speech. Could it be
that our early intervention system despite all efforts is nevertheless
predominantly based on the standards and perspectives 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’
(1985) 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 blind children with that of seeing children.” Not only was this phrase
important for helping me to make sense of the results of developmental tests,
it was even more important because by discussing the topic of differences in
development Dr. Ferrell also raised the issue of 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 downhill skiing.
For documentary purposes and as video feedback for the students I had a video
camera, which I used as often as possible. The camera was very popular with the
children, whether they were fully sighted 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,
this is 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 take 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 of the air.
I. : That’s
not possible, you can’t take a picture of 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
enthusiastic, his parents were surprised, everybody else was
shocked. How can you give a camera to a boy unable to see? It sounded cynical
to some people. 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. Something happened nobody
expected. Ulrich (that is the boy’s
name) was, as I mentioned very enthusiastic about taking 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 into 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 tank 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 net of wire and where not? What is it about hearing and seeing? Can seeing
people see everything 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 child who is born blind. 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. I understand as
little about how he perceives the world as he understood about how other people
see the world.
What does this mean for the experience, for the development of the
self-confidence of a child, if this unimaginable power of vision takes on such
dimensions. If children learn again and again that people who can see can do anything they might
conclude that they can do almost nothing. How can they value their own skills,
if those who can see are not interested in them? What do we think they are capable of in their
ability to experience at 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 of how the world of the blind and visually
impaired children looks. 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 should be able to regard 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 preoccupied me for quite some time now. The system of early
intervention forces parents to be co-therapists.
But first I have to mention that for 17 years I regularly
conducted parent-children courses. This means living together and learning from
each other for 2 weeks in a place suitable for 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. They and their children 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 it. 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 learned at play and imitation. This is something that has 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.
If it comes to imitation we all know that the visually impaired will
have a problem with imitation based on visuality. However, do we offer enough
possibilities and variation of acoustic aids and games in which they are able
to imitate sounds? 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 “therapy experienced” they
have acquired a high competence in dealing with professionals and that applies
to the parents too. The latter have become real co-therapists. The fact that
they are first and foremost parents and they have a completely different role
from that of the specialists is in danger of getting totally lost.
There has been a change in demand from parents in the last fifteen
years. I have noticed this changes in courses provided for the families. In
former time the most important aim to the parents was to live as a family and
enjoy life with their visually impaired child. However this has changed.
Nowadays, parents demand different types of therapy, nothing else.
After several days of our approach, parents are relieved to find that they can
spend time with their child in play and in joy and still receive the same
results or better as with the therapy - this is what we experienced in
our parent-children courses.
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 acquired the views and concepts of the
specialists and therapists. This is something we should change, even if it
doesn’t suit us. 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 is.
Parents are living with their children, while specialists see them only for a
few hours a month during a few years. It is not their job to make demands on
the parents but to have the right to choose the support and early intervention.
To see parents as clients, this has consequences for the role of the
specialists. Their duty is, to give the parents all the information about the
subjects concerning early intervention, which are required and to offer them
the whole spectrum of available programs, concepts and materials, not only part
of them.
To be able to do this, they need to be on the top of their field at all
times and this seems to
be impossible if you don’t work in an transdisciplinary team. 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 form that support for parents or those close to the child should
take is again of course dependent on the respective social setting and the kind
of support the parents need. Therefore it might look quite different from
different cultural perspectives. Nevertheless, our common starting point
might be “Early intervention: To strengthen parents and those close to the
child, not to change them.” It is not the impairment itself or its functional
effects that must be cosidered, but rather the social responses to the visual
impairment. If we use the definition that handicap is an ‘unsuccessful dealing
with diversity’ (Walthes et. al. 1994) all efforts should be put into positive
results. This means to support and strengthen those who have to and are able to
deal with diversity: the parents and the child. The move to an inclusive
community will fail if we ignore differences or accept a general model. It can
and only will work, 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.
References
1. Comenius Group, Walthes, R..et.al.: Low
Vision in Early Intervention. Pre-Course Materials.
Cd-rom 2000
2. Ferrell, K.A. (1985): Reach Out and Teach.
3. Hyvärinen, L. (2000): Vision
Evaluation of Infants and Children.In:
4. Silverstone, D.S.W.; Lang, M.A. Rosenthal,
B.P. Faye, E.E. (Ed.) The Lighthouse Handbook on Vision
5. Impairment and Vision Rehabilitation. Vol
2. pp 799-820
6. Walthes, R. et. al. (1994). Gehen, Gehen
Schritt für Schritt. Untersuchung zur Situation
von Familien mit einem blinden, mehrfachbehinderten oder sehbehinderten Kind.
7. Walthes, R.: (2000) Visions and Strategies for the New Century.
ICEVI Proceedings. www.icevi-europe.org/cracow2000/walthes.html
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