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Introduction

Hello, my name is Paul Ennals, and I come from the Royal National Institute for the blind in the UK. Since I am going to talk to you about values, perhaps you should know something about my own values. I am English; therefore, you will know that I believe that tea should be drunk with milk and sugar, and beer is best warm. The best way to travel is in big red buses; I don't make love with the lights on; and I think the Queen is a lovely lady. Well, perhaps that is the popular conception of what some of my values must be if I am English. Personally, I do not recognize many of them! But then it is often hardest for us to recognize such things in ourselves.

My colleague Stuart Aitken, who is one of the respondents, is unable to be here. He is from Scotland - never to be confused with England. He will introduce himself on video....

One of the things we are taught about Scots is that they are mean only a Scot would send a video because he didn't want to pay the air fare...

As you travel to different places in the world, you can see many differences in the services for deafblind children and young people. Some of the differences are due to finance; nobody but the Scandinavians can afford the very high staff ratios that we find in their centers. Some differences are due to climate; in Africa, where the weather allows you to spend most of your life outside, the classrooms and the houses do not need to have as much space inside as in the frozen wastes of northern Canada or the wet bogs of central England. Sometimes the differences are due to different levels of understanding; when you find deafblind children hidden in the appalling mental handicap institutions of Albania and even Greece you must know it is because the staff there do not have the skills to identify and tackle these needs. Sometimes the differences are due to pressures of society; in Ethiopia some years ago I learnt how important it was that the schools for blind children had high walls - to protect the children from being stolen and used for begging.

But the greatest differences come from none of these factors. They come from the different value systems that people hold. What do I mean by values? I mean the things that we think are important, the things that make us decide what is right and what is wrong. Our values affect everything we think and do. Often without us realizing, our values influence how we plan our services to deafblind children; what we teach them; how we teach them; and what we expect from them as young adults. In this talk I am going to explore some examples of how different values systems can affect the way in which we work with deaf blind children and young people. I want to show that in order to work with deafblind children we need to understand our own values, and confront the conflicts within our value systems. I will suggest that a good school or center needs  to be open about its values; and it needs to help all its staff in understanding their own values and how they relate to the values of the school. We also need to begin the quest towards understanding how we can recognize and respect the values that our deafblind young people themselves hold, and how we can help them to develop a value system that is meaningful and supportive.

At the heart of our value system is what we feel about disability itself, and what we feel about the idea of having a disabled child. To some people, in some cultures, having a disabled child is a shameful thing. It reflects perhaps upon the behavior of one or both parents; perhaps it is seen as a punishment for some unnamed past sin. Is it God's way of punishing the family? Or is it because of the way I behaved while I was pregnant - smoking, or staying out late at night? I think there is no parent of a deafblind child on Earth who has not wondered whether they should feel guilt at some time. Most parents move beyond this feeling, and in most cultures parents are not blamed for the birth of a disabled child. But in rural Greece and Bulgaria, for example, disabled children still remain hidden in the back room. In the UK, many of the Muslim communities continue to feel shame. If this is the value system, then many such children die. It is not priority for doctors or for the families to save them at all costs, and it is difficult for families to be seen at the hospital with their child. If the child lives, then she may be kept at home. If she goes to school, it is likely to be one far from home, for other children like her.

I came across an extreme version of this value system a few years ago. It was in Romania, just after the Revolution in 1990, and the world was shocked to discover thousands of children living in terrible conditions in orphanages. Many of them were disabled; either from birth, or as a result of the terrible neglect that these children received. I found many deafblind children in these places. At first I could not understand how people could treat children this way; Mothers and Fathers simply ignored the children, as if they were not really human. But as I talked with the staff and parents I came to learn how their values had been formed. Under the dictatorship of  President Caescescu women were required to have children. No birth control was allowed, and women were punished if they did not have a certain number of children; it was Caescescu's attempt to increase Romania's population.

But families simply could not afford more than a couple of children. So poor families would give their children into the State orphanages. The children were unwanted; they were resent. Indeed, many people explained to me that they were not thought of as the children of their parents. They were Caescescu's Children. They grew up in the orphanages; the weak ones died; the strong ones grew up loyal only to Caescescu, and became the most vicious members of his secret police, the Securitate. In that state, who could love Caescescu's children? What was more natural than to hate them, and deprive them of love and affection? As people in Romania and outside tried to improve the condition of these children, the greatest barrier was not the lack of resources; it was the values of most of the ordinary people. Thank God things are now changing.

In other places, a disabled child represents something different. He is a challenge from God; a burden placed upon you as a test of your faith and your love. You are not at fault; rather, you have been chosen as someone who can be given this great test of your love. If this is the value system that you and your family hold, you will devote yourself  selflessly to the care and love of the child. His happiness will be more important than his achievements, since his purpose in life is to elicit love from you. Everyone in the community will be called upon to help you in your noble calling. If this is the dominant value system, then schools will focus more on care than on formal education; children may not be stretched to their full learning potential, but they will be loved.

Other people and cultures are more 'matter-of-fact' about disability. It happens occasionally, and it is very bad luck when it does, but now we just need to roll up our sleeves and get on with sorting it out. We often find this attitude in agricultural areas;
everyone knows that you have the odd 'bad lamb', one of a litter that is not quite right. Here, the child is seen as one of the family from the start; the rest of the family naturally accepts their duty to support their weaker member. Nothing special is done or sought; often the child attends the local school, with little fuss and little specialist support.

Some people, especially some disabled people, hold a different set of values again. For them, disability is not a disadvantage; it is society which seeks to handicap disabled people by not adjusting. If I am in a wheelchair, I am only handicapped when I come to a flight of steps. If  I am deaf, I am not handicapped when signing to other deaf people; it is hearing people who are handicapped if they cannot communicate with me. These different values come from an increasing emphasis on equal rights for disabled people, an increasing belief that all people should be entitled to be treated equally and have equal value. Such an approach can lead to the belief that all disabled children should be educated in ordinary schools, since to deny them access to the local school is to deny them a human right. It can even lead to the belief that it is unnecessary to seek to cure a disability through medical intervention.

Well, these are just some of the different values that people apply to disability. It is not as simple as to say 'In this country they hold this value, in that country they hold  the other value'. Different values will be found in the same country; in the same family; even in the same person.

Intervention from Stuart - differing value systems within one individual; internal conflicts; differences over time.

Now let us look at how values can affect how we work with deafblind children. What is the point of educating a deafblind child? Perhaps you believe that it is to enable the deafblind child to take their place in society; to ensure that they can fit in well within their family, and be accepted by the community around them. Then you will give priority to teaching them social behaviors that will help them to fit in. Recently I visited a wonderful school in Jerusalem, Israel, for multi handicapped blind children including deafblind children. At Keren Or, most of the children are Jewish, and it is considered very important that the children can take part in the regular prayer rituals. These rituals form a vital part of family life. So the first thing is to hope that the children will not disrupt the ritual. The next thing is to help them to play a part themselves. Who knows how much the children understand of the meaning of it all? But the deafblind children take part in the religious life of a community for  whom religion is more important than anything. This school also placed great emphasis on children doing things together; in schools in the USA and the UK I see a lot of one-to-one teaching, and children following individual programmes planned to meet their individual needs. In this Israeli school, it is considered more important for children to learn to interact with each other, to play together, to do things as a group. Most of the activities were planned to encourage this concept of working together. Which is more important - that education is geared towards individual achievement, or that education is geared towards social cohesion?

The answer depends on your values system. There is no right or wrong.

I remember some years ago learning how my values needed to adjust to the values of my pupils. My pupil was Mike; a totally blind young man with hearing loss and learning loss and learning difficulty. He had made his way through my school, cheerful and confident, quite unable to learn braille or tie his shoelaces but able to enjoy himself and have a laugh. He was sixteen; a big lad, as tall as me. The kind of young man who is very loveable when he is little! What was he to do when he left my school? Well, my values told me that people should go to college  if they have the chance; there was a good Further Education college offering  Mike a place, so that seemed the best thing. Perhaps he could learn a little literacy, or improve his counting skills. But his parents thought otherwise. No child from his street had ever been to college; how could they hold their heads up in the area with a son who went away to college?

There was a special factory for disabled  people in the area, and they might offer him work there. That way he would stay in his community, be seen as a valued member of that community, and do what his family and friends hoped of him. That was the right thing for Mike. And the most important things we taught Mike in his last year were how to get to the pub; how to buy a round of drinks; how to tell dirty jokes; and how to get home again without falling over. Sometimes it is a tough job teaching these children!  There are other answers to the question 'why should we educate a deafblind child?'.

In Eastern Europe under the old communist regimes they had a clear view; that everyone had a contribution to make to the economy and the community, and that this contribution could be made by some form of productive work. This was one of the cornerstones of their philosophy, and the existence of deafblind children provided the opportunity to demonstrate it to the world. If even a deafblind person could be helped to contribute, then this would support the political view that the right social conditions could overcome any disadvantages. So the Great Russian tradition of teaching deafblind children developed over several generations, allowing many deafblind students to enter University. Those who did not enter University were prepared for working in a factory; their education prepared them for making their contribution. However, as in every country there were some children with such severe disabilities that productive work would never be possible. These children did not receive the same intervention and attention until more recent years. The values behind the education system did not make education for these children such a priority.

So our beliefs about education affect what we do. Is the purpose of education to help deafblind children integrate socially? Then teach them social skills suitable for their community, teach them to behave acceptably, and prepare them for where they will live. Is the purpose to enable each individual to achieve their full potential as individuals? Then plan individual education programmes that give maximum choice to the pupil, and then hope to be able to provide what the pupil eventually chooses. Is it to enable them to work? Then begin as soon as possible in preparing them for the work that is to come.

Will our values also affect the way in which we work with children? Yes, in lots of ways. Let me start with communication. My first piece of video shows a deafblind young man being taught some signs. (Video of Manor House - A Place for Stephen) Here, the deafblind young man seems to be seen as a passive partner. The purpose of communication seems to be to enable the teacher to tell the young man what to do. So the teacher chooses the signs to be learnt; chooses how they are to be used, and trains the young man in using them. (By the way, this video was made some time ago the center does not work like this now).

But other people feel that the main purpose of a communication programme is to enable a child to communicate with us; that it must be a two-way process between child and adult; and that we need to follow the lead of the young person in finding out what they want to communicate. This second piece of video shows David working with a very young deafblind child; I think this indicates a very different value system. (Except from 'One of the Family')

When I visit a school or center for the first time, I often find myself thinking: do the staff feel they are working with the children in order to help them develop at their own pace, or are they simply following a programme laid down for them by somebody. What can I learn about how they feel about deafblind children?

Intervention from Stuart on video: different organizations may have different value systems depending on how young they are. Similarly, less experienced staff will want to rely on 'textbook' approaches with 'objective' techniques for observing, assessing and planning activities.

Other value differences exist. What do we think about speech or signs? For many years, teachers of deaf children felt that using signs was somehow inferior to using speech, and they worked very hard to prevent deaf children using signs. Lip-reading was the preferred system, since speech was valued more highly than sign. Of course, deaf children with less than perfect vision had no chance of lip-reading; it is hard enough with perfect vision. One still finds the debate raging about the best way to develop communication, and I do not intend to stick my nose in there. But it does interest me that much of the debate is nothing to do with what is the most effective system in the interests of the child; it is all to do with the attitudes of the various people towards speech and towards signs, and the values that people hold about who deaf and deafblind children need to communicate with, and what communication is for.

Intervention from Stuart on video - concerning the attitudes of staff before introduction of a communication programme, and how this can influence the effectiveness of different methods.

Values influence us even more when we think about behavior. What is acceptable social behavior? What is desirable social behavior that we want to encourage? Remember my example of the school in Israel; there, an important part of the programme was encouraging children to learn the religious rituals. I remember one very moving moment. A child was being taught to use a communicator board; he had no vision and no speech, and was severely physically handicapped, and no-one knew how much
speech he understood. The speech therapist presented him with different objects, and asked him "do you like this?", and he had to indicate on his machine "yes" or "no". He seemed to understand this concept, and they were very pleased. Then the speech therapist asked him "do you like chocolate?", and was very surprised to receive the answer "no"; she knew he liked chocolate - maybe his previous responses had been pure chance? She tried him again - "do you like chocolate?" - "no". Then the wise School Principal stepped in. He is an orthodox Jew. "Lenny, you have just eaten meat for lunch. It is against your religion to mix meat and dairy products. Isn't that right?" To which the child pressed "yes, yes, yes", shaking with relief. That child had only the very beginnings of formal communication, but he knew what was important in his family.

Different values can have very direct effects. Why are that so many deafblind children in the UK have feeding problems, when deafblind children in the Middle East and Africa seem not to? Because in Africa it is acceptable to eat with your fingers; you do not have to face this massive challenge of learning to use ridiculous knives and forks and spoons. Just watch an English mother helping their child to feed himself with his fingers, and you can see someone deeply uncomfortable, fighting an internal fight against everything she thinks of as acceptable. And you do not have to teach a deafblind child to tie shoelaces if everyone else wears sandals.

What is acceptable social behavior? Is it acceptable for a young person to go up to an adult and hold their hand? Given them a hug? Kiss them? Well, it depends on how old you are, how well they know each other, and so on, but most particularly it depends on what we think. The things that are acceptable to one person will certainly not be acceptable in the next family, or in the neighbouring country. More confusion takes place between people from different cultures on this point than on any other. In England, if I know someone very well indeed, I might dare kiss them once, but certainly only a woman. In France, you would
expect a kiss on each cheek, man or woman. The same friends in Italy, if I do not give them three kisses they will be deeply offended.

Wherever people teach deafblind children and young adults, they will say their biggest worry is sex. What do we do? How do we teach them acceptable sexual behavior? This is the classic example of where our values get in the way of our teaching. For we all know that sex is something private, that our sexual values are not normally to be discussed with others. Yet in this area above all others, if we are to help deafblind young people to learn a way of living that is satisfactory for them and acceptable to others around them, we must confront our values and work out what we ourselves feel.

What do we think if we come across a young deafblind person who masturbates? I think everyone thinks differently. Perhaps you think masturbation is shameful. Perhaps you feel it is acceptable, but only at certain times in certain places. Perhaps you are ashamed of your own behavior, and the behavior of the young person makes you examine your own behavior. Does it force you to think of the young person in a different way? Instead of being the adorable young child to love and care for, have they become something more threatening a sexual being? If you must use touch as your means of communicating with him or her, does it make you rethink all your actions? The clue to what you feel is what your values are.

And what about sexual activity between two deafblind young people? How do you value sex? Is it a God-given gift, a way of providing pleasure for all people, that deafblind people should have every right to enjoy? Or is it the culmination of a mature relationship between two consenting adults, which carries great responsibilities and dangers that many deafblind people could never take on? I do not have an answer, but you need to find out what your answer is before working out how approach the topic.

But working out your values is only the start. For is it really your values that count? If we are responsible for guiding the sexual development of a young person, surely there are other sets of values that count too? What is the policy of the organisation who runs the school? What are the values of the people who pay for the young person to come to the school? What do the parents believe is right? What about the Principal, and the senior staff of your school? And what about the values of the deafblind person themselves?

And here we start to see the true scale of the problem. For different people have different values. Let us take this example, of the deafblind young person who seems to want to have a friendly sexual relationship within another deafblind young person.
 

Use OHP
 

• The Directors of the Board are probably male, middle-aged, wealthy, traditional, concerned about reputation.

• The Principal of the school is middle-aged; well-educated; male?; professionally trained; worried about his or her job.

• The junior staff member is young; female?; unmarried; poor; sexually active and adventurous; less well educated.

• The parents are middle-aged; married; embarrassed; worried about their little child; protective.

• The deafblind person knows what he or she likes; has not been educated to know about sexual matters; places great importance on things that you feel.

Whose values should determine what should be done?

Well, life is always a compromise, isn't it? I know that I have to compromise my values most days of my life. If I want to keep my job, there are some things I had better not say or do! If that becomes too difficult, then I can always leave. And, perhaps, if I pretend to adopt the values of others for long enough, perhaps they will become my values.

But the crucial thing is to make these decisions consciously. Whether we like it or not, we have more impact on the lives and the behavior of deafblind young people than we do on any other groups of children. They are dependent on us to learn how to behave, how to learn, what to do, what to expect. This greater power that we have carries responsibilities too. We need to confront what our own values are concerning the education and lifestyle that we want for our deafblind young people. Then we need to find ways of compromising between the values systems of all the different players in the game. And somewhere in the middle of this, we need to find a way of recognising the right of each deafblind person to develop their own value base.

This is perhaps the greatest challenge of all; how do we influence and respect the value system of a deafblind person? We can teach them all the skills in the world, but they will only be party tricks unless the deafblind young person develops an idea of what they should do in different circumstances. How do they learn a concept of right and wrong? Is it only that the "right" thing gets a reward and the "wrong" thing gets a punishment? I suppose that is how things start for all of us, but we would all hope to go beyond this in our own lives. We all of us pick up our values from those whom we respect. We also learn some of our values by rebelling against what we see as the values of our parents or teachers; we attempt to develop our own values, perhaps in opposition to the ones we are first fed. Sadly, as middle age comes over us, most of us seem to revert to the values that
our parents first presented to us. This is part of the process of maturing, and we need to find ways, I believe, of enabling deafblind young people to go through a similar process. But it can be very difficult; what if we come to the view that the deafblind person really likes hitting people? What about the deafblind person that makes a conscious choice of doing very little all day and staying in bed, rather than joining in all the fascinating and educational activities that we think are in their best interests?

So, what are the implications for policy-makers?

First, we need to ensure that schools and centres have a system that enables staff groups to examine their own values, and to draw up a statement of the values that they wish to follow. The process itself is as important as the outcome; it should enable all staff to think about what they believe in, and find ways of applying it to the young people whit whom they are working. Not all staff will be able to agree on all things, and compromises will be necessary.

Second, the centre managers need to consider whether this statement is acceptable to them, to the funding bodies, and to the laws of the land. Some things are just not acceptable even if the staffs want it to be so. Each country has laws about acceptable behaviors, and a centre for deafblind children is not necessarily a place to fight political battles. Evan if the staff felt that the use of hallucinogenic drugs was acceptable, the manager would have to have their own view! In the end, the value statement of an organisations should originate from the staff and the clients, but take into account the views of all other players too - parents, managers and, where possible, clients.

Third, centres need to have thought about what to do if a staff member finds themselves unable to follow the agreed value system. How flexible can the centre be? Is it a core value that is essential to the philosophy of the place, or is it one where a degree of variance can work out?

Intervention from Stuart: implications for staff selection

In summary, the variations between our schools and centres is what makes our field great. We have not reached that awful state where there is only one way of doing things; like one of these modern hotels which looks exactly the same in Brussels, Boston or Buenos Aires. Wherever we go the children are different, the classes are different, the teachers are different. Yet we can learn from each other - but only if we learn to look beneath the surface and see what is really happening where it counts, in our minds and our souls.

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