University of Edinburgh
 

Vision for Doing

Assessing Functional Vision of Learners who are Multiply Disabled

Chapter 4

Working Principles (Ten Commandments)

In this the final chapter of PART ONE we put in place the last of our building blocks. For having taken up a shared perspective having got inside the skin of the learner - what do we do next?

Here we lay out certain principles which we believe should guide our approach with learners who are multiply disabled. We have euphemistically called these a set of commandments. Affirmation of principles is in our view simply the next step on from trying to capture the frame of reference of the learner.

It is our belief that the following principles are relevant to wide range of professionals engaged in work with the learner who is multiply disabled.

Background

Why, you may be asking, should a whole chapter be devoted to consideration of principles underlying methods and techniques of daily practice with learners who are multiply disabled? For in this chapter we intend to investigate not the what of practice, rather the how of practice. Surely it is time to get on with actual practice? Consider then where we would be if we did not dedicate at least some space to discussion of this subject.

Without some notion of what constitutes good versus indifferent practice, we would succumb to the predators hovering round special education. We would be suckers for new therapies. Advertising executives, responsible for new technologies all sorts of bells, whistles, coloured lights and soothing aromas, would drool at the thought of quick and plentiful sales commissions. Potential learners would have one gadget, used in a certain way, thrown at them at 10 o'clock, to be followed immediately by some other gimmick, used in an entirely different way. The world would be without sense to a learner with multiple disability.

Guiding principles offer a 'map-and-compass' to be used in the minefield of current curricular opportunities and, no less important, the means of avoiding future damaging experiences for the learner. With these guiding principles we become less at the mercy of the latest trend. Such principles should be relevant across disciplines (we will soon see the advantages this can bring). They would also be applicable beyond our specific 'client group'. Otherwise we would properly be accused of saying "Up to, but not beyond, a certain point these principles apply. Beyond this point another set of principles will apply.">

Some readers will find that the concepts which constitute our principles are familiar. Other readers will find them strange, positively alien, and others still, while believing themselves to follow this approach, will in fact never do so. What then are these principles? As we mentioned we intend to use as a metaphor the Ten Commandments. Not only will you have heard this term used before, but the metaphor too is not that original. In 1989 Diane Twatchman, from Connecticut in the USA, applied this metaphor to the field of augmentative communication. We liked it, thought the idea was sound, and use it here for own purposes. It is no coincidence that there is overlap of the actual 'Commandments' between Diane's and our own.

Table 4.1. gives a synopsis of our working principles, or ten commandments.

table 4.1

1 Thou shalt share the learner's perspective

As we have already spent some time on this particular 'commandment', you will be relieved to know that we do not intend to devote any more space to its discussion. If you want to refresh your memory of this topic, refer to the early part of Chapter 1.

If we are successful in sharing the learner's perspective, it follows that we will have been successful at opening our eyes. We include it to emphasise that it is an indispensable aspect of a quality assessment.

2 Thou shalt open thine eyes

If we are successful in sharing the learner's perspective, it follows that we will have been successful at opening our eyes. We include it to emphasise that it is an indispensable aspect of a quality assessment.

3 Thou shalt ascertain strengths and abilities

This is the other side of the coin from identifying what a learner cannot do. It is not that we are saying weaknesses should be ignored. It is simply to say that a balance has to be restored, in recognising abilities and not only disabilities. All too often we come across Records (or Statements) of Need which describe in detail those areas of weakness of the learner with multiple disability. It can sometimes be difficult to discover in such a report anything other than disabilities.

4 Thou shalt follow the learner's lead

The famous Swiss psychologist (or more precisely epistemologist) Jean Piaget once remarked that "Everything you teach a child prevents him from discovering it himself". We would echo this thought. To illustrate what is meant a couple of experiments are presented in the accompanying caption1,2. Reading about these experiments may for some be a little disturbing.

Both experiments indicate that active control over the world may be an important factor in development and learning. This active control is often called Contingency, meaning simply that things happen as a result of a person's (or animal's) actions. The second experiment also shows that experiences gained in one setting may carry over to other settings, making the learning of new activities meet with failure. There are lessons for us to learn from these experiments.

Offering contingent control

Wherever possible let the learner lead. Allow her to show what she wants to do and follow and encourage in these activities, giving time for her to explore. Comment incidentally on what is done. Do not continually focus on talking to or at the learner, naming objects, commenting on the learner's movements and one's own movements and activities. For in the latter the content of one's speech becomes like that of a watcher or observer rather than trying to participate in the learner's experience. The result is usually to interfere in that which the learner shows an interest. Rather than having an environment that is directive, instead try to allow the learner to direct his or her environment.

Constant questioning and directing is likely to lead to withdrawal. Give time to respond, be opportunistic in taking up cues from the learner when interest is shown in some activity. Be prepared to follow up on the unexpected. This kind of approach ties in very well with our emphasis on the active nature of our attempts at stimulation. For we believe that there is an essential difference between stimulation that is active versus passive.

Stimulation

What does it mean when we say that stimulation should be active rather than passive? Surely all stimulation is active, and can never be passive? To see why we think it is important that this distinction be made let us compare examples of active and passive stimulation. First an example of passive stimulation, one which is typical of many suggestions for stimulating a child's vision. It should be easily recognisable. The suggestion is often made to suspend checkerboards, bullseyes, and other abstract patterns above a child's cot. Or to shine a light towards the child to stimulate vision. Just like the kitten in the carousel, the learner is passive.

We might change this set-up in minor ways. These would have the effect of fostering active stimulation. A simple means would be to stop shining the light at the child, and to introduce it from behind onto real objects. One could bring the visual pattern into range of the child's reaching; or have the child blow at the pattern, thus controlling the movement of the pattern.

The past few years have seen increasing emphasis on using techniques and methods which emphasise learners having control over events, objects and places in their world. Previously, practitioners were often content to present things passively. As we have seen, this kind of approach does not get us very far. Energy must be spent in trying to develop activities so that the learner leads: we follow. In PART TWO, we will meet many examples of how we put this 'commandment' into practice.  

When working with learners who are multiply disabled there is often a tendency to break up areas of learning and development. There are many advantages to be gained by doing so. Unless activities are presented in meaningful 'chunks' many achievements would not be made. However this can be taken too far. Emphasis may become placed too strictly upon discrete skills enhancement, for instance in shape or colour sorting, language development, mobility, tactile stimulation, feeding, and so on. Timetabled events such as swimming, riding, shopping and music become ends in themselves.

Yet these same events represent marvellous opportunities for developing alternative routes to communication. Often seemingly different areas of learning have more similarities than differences when working with the learner who has severe visual disability3.

6 Thou shalt adopt a united approach

One of the authors once wrote an extended article on the need for a united approach. In keeping with the weight we have attached to taking the perspective of the learner (First 'commandment, the article was in fact written as if the person with multiple disability was doing the writing. Responses to the article were interesting. Speech therapists concentrated on one aspect, physiotherapists on another, teachers on another still. Yet no subject-specific material was contained in the article. It was difficult to avoid the conclusion that each discipline brought to their work an entirely different world view.

Not exactly a unique conclusion, we admit. But where so much stress is placed upon multi-disciplinary approaches, what does this anecdote lead us to conclude? It suggests that work carried out with young people who are multiply disabled may not have a coherent focus. Different professions may pull in different directions. The outcome of many multi-disciplinary case meetings is often one where people leave with the same entrenched views with which they entered the meeting.

As can be seen from the list below, one reason for not embracing coherent frameworks may be that a common ground is not all that obvious.

Where specialised therapies are in use, it may be difficult to see beyond the therapy. Even though only a few simple changes may be required to working practices, in order for that therapy to be integrated into a wider sphere of objectives.

To attain a united approach requires communication among professionals. As we have seen this goal is often more obvious in its breach than its observance. There are many reasons why it remains difficult for inter-professional communication to take place. It may arise from:-

  • lack of common terminology;
  • possible common goals not being recognised as such;
  • lack of time to share thoughts;
  • the conflicting demands of both listening actively and getting across one's point;
  • lack of openness and trust;
  • professional rivalry;
  • one person or group dominating meetings;
  • insensitivity to feelings of others;
  • 'difficult' people (What makes them difficult? Anxiety?).

You may well have recognised that among this list there are items which could be improved by structural change or changes to the system that is in operation. This may require administrative approval, or time to be given over within staff meetings to discuss how these items could be dealt with. Are meetings being run as well as they could?4

7 Thou shalt think of tomorrow

A common thread ran through the two previous 'commandments'. Both identified the need for a collective approach as to the purpose and methods to be used. There is, however, an additional coherence that needs to be introduced into our practices. We need to think ahead.

For people who have severe learning difficulties, consistency and continuity of approach is necessary. Whether we are about to embark on - use of a computer, or using less complex technology; adopting a symbol system of communication; giving thought to choice of objects by which we might represent daily activities; or indeed a host of possible strategies for offering the world to a learner - we must think ahead. Blindness is enough of a disability without creating blind alleys ourselves.

A note of caution

Rigid adherence to this 'commandment' could however present us with a serious dilemma, which we do recognise. For if we do not yet know what will be successful, how on earth do we ever begin? Resolution of this dilemma is not usually that difficult. For even in the very experimental phase, when trying out a new method, we can still ponder on what to do if the method succeeds versus how to proceed if it fails.

8 Thou shalt value the learner

We hesitated before deciding to include this as a 'commandment'. Our reluctance is due to the fact that we did not wish to offend anyone. After all by choosing to work in this field, almost by definition you already value the learner. By this of course we mean that your view of the worth of the learner who is multiply disabled is equal to that of any other human being.

We decided to include this as a principle for two reasons. First if anyone happens to read this book and is contemplating working in the field then he or she might give it some thought. Valuing the learner makes it a whole lot easier to invest time in trying to share his or her perspective. Our second reason is that while individual teachers and care staff may well value the learner, others in positions of power may not. These people may arrange timetabling, not give access to activities, or a whole host of other difficulties may be created. Where this occurs try to identify ways of dealing with the issues.

9 Thou shalt give the learner time

Usually we do not give enough time to allow the learner to respond. Because you are caring you will naturally want to do things to fill the gap, but sitting waiting for a response to happen is allowing opportunities for that much needed control to take place. It will take the learner with multiple disability longer to process information, and longer to organise a response. We need to recognise this and build in that extra time.

In fact by developing the practice of waiting to capitalise on opportunities that arise, you are at the same time incorporating this element of giving more time.

10 Thou shalt evaluate thine own work - not the learner

We believe evaluation is an important tool. Evaluation is something that should take place, not of the learner but of one's working practices and methods.

There is nothing mystical about this area of concern. It is simply to say that you should aim to be 'doubting Thomas's' when it comes to the methods employed and the conclusions drawn. It is always nice to rejoice in the outcome that seems to have emerged after embarking on some new activity with a learner who is multiply disabled. But was it really true that the new activity was responsible, or was it perhaps something else? If so, what?

Evaluation helps to tease apart whether observed improvement arose from things completely beyond our control. A good example of a time to pose this question is when some technique is used to 'stimulate vision' in an infant. Suppose that by using this technique, improvement occurs over the course of, say, 6 months. The question remains as to whether the improvement was due solely to biological maturation, or the specific technique introduced.

If it was due to the former, then it would make no difference the amount of time spent on stimulating vision: it was going to happen anyway. Now this is not to say that it is wrong to stimulate vision. It is to say that it is helpful to investigate whether the technique or something entirely different was responsible for change being brought about. Frequently it is very difficult to tell what was responsible for the change.

Another reason for remaining in doubt is that the reason for improvement may be one of a general effect such as some one taking an interest or that of counselling involvement. This can be an especially striking effect for those who work with the families of younger children. The story in the caption (Need for evaluation) helps to illustrate this point.

Summary

In this chapter we have outlined certain principles which should work with learners who are multiply disabled. Unlike those of Mount Ararat we do not see them as being set in tablets of stone! They can be regarded as a skeleton or template onto which can be laid our actual practice. The nature of that practice is the subject area in PART TWO of Vision for Doing.

Finally, but not quite in the nature of a commandment, be confident in your own abilities!