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Victor described the situation here- no financial or other resources, no teacher training and very little public interest. But the world is always changing....and we can never be sure what development may or may not happen next. There are those of us who come from countries where we have had excellent provision for many decades. Some of us are now finding that we are having to fight hard to hold on to what has been developed- where competition and the market force are everything, - where governmental policies and financial restrictions are beginning to erode the services which have been established for many years and in which we have taken a certain amount of pride. It is hard to have nothing - perhaps it is equally hard to see the loss of provision and the lowering of standards of excellence that had previously been achieved. So the struggle is never finished.
I would be totally unequal to the task of responding to all the dificulties that Victor mentioned, the building of a competitive economy, a socially fair society and a real democratic state, - it would take a better woman than me. So I am going to concentrate on the aspects of professionals and parents working together.
Even when economic and social
factors are good and when the general public are for us we can never have
the ideal, because our provision is provided by human beings!!
Victor, you described the
ideal communication and co-operation that should exist between professional
and family and between professionals themselves. You also described the
professional who is less than perfect. Well , of course, we are all less
than perfect, but I would agree that there are some professionals who do
real harm.
I always think it is better
to do nothing than run the risk of doing positive damage.
A story from my own experience
will perhaps support this. Although I have many examples of marvellous
co-operation and collaboration between professionals, it is often unfortunately,
the opposite examples which demonstrate a point.
One evening I had a call
from a mainstream teacher who had a boy, Tony, in her class. Tony had very
severe low vision. This child was supported by a teaching assistant whose
name was Catherine. She provided some of the support in the classroom and
some in one to one sessions in another room in the school. On the phone
this class teacher said, "I really do not think I can cope with having
Tony in my class any more." I said I was sorry to hear this - that I hadn't
realised that there were any problems and thought that Tony had been doing
well. "Oh no", she said, it's not Tony that's causing the problems, it's
Catherine" I asked why.
"Well", she said, "she makes
such a fuss when she come into the classroom to fetch him. She knocks on
the door , calls out his name, walks noisily across the room, - it disturbs
the other children and interrupts my lesson so much. I am sorry, but I
am really tired of it".
I said I would do something.
I knew Catherine to be a slightly difficult lady, so thought I would take
her out to lunch and chat to her informally. I explained that when we are
in school it is necessary to be as unobtrusive and quiet as possible and
said that I was sure she would do all she could to help the class teacher.
A week later, I got another
phone call from the mainstream teacher. "I've had enough" she said, "it's
got worse." She then described what was now happening. The assistant was
behaving like this.
***(I will be doing actions and gestures to demonstrate.)
All the children in the class enjoyed watching this performance and all concentration on the lesson was lost. How something is done is as important as what is done, particularly in the area of supporting and working with parents. I feel the professional that I have just described would never have the real empathy to respond to parents needs. It has to be a particularly sensitive person to do so.
I was glad that Victor mentioned the interactive and dynamic nature of the family. As professionals, we can think - or expect that- the child with a visual impairment will always be the focus of the family's attention. This is not so. Families have other problems. Poverty has already been mentioned - and all over the world, families face unemployment, problems with other children in the family or with elderly parents. And many other life situations to be faced. But there are also family pleasures and celebrations - birthdays, weddings, the birth of a new baby in the family, all of which do - and should- become a focus of the family's attention. I once made this mistake. I visited one young mother of a blind child, called Michael, every two weeks and was making one of my regular visits. When she opened the door, she said 'Oh no, Juliet, not you. I haven't done anything you suggested last time - I've had my sister staying with me'. Far from helping her I had given her an extra pressure, through giving her too many suggestions, - even if the suggestions were very appropriate. I know it would have been wrong if she had worried about working with Michael instead of enjoying herself with her sister. Helpful interaction? I don't think so. Family concerns and interests change from month to month - sometimes daily. We must not make the mistake of thinking that if parents are not interested in what we say, that they do not care or worry about their visually impaired child. It's just that other things are uppermost in their minds at the moment.
Victor, there was so much we all agreed with in your paper. I am sure that we all totally endorse his view that education starts at the beginning - at the birth of the child. You talked about parents wanting to watch their children as they grow so that they do not fall or get hurt . A natural tendency perhaps. But I am sure you will agree that the children do need to fall, and get hurt - sometimes. The basic needs of food, shelter and love are not enough. A major need for us as people is to overcome challenges, to test and extend our limits, to have high expectations of ourselves. And more - we need to fail and to learn that this failure is not the end of the world. I feel that this may have been one area where some of us have gone slightly wrong. With our educational programmes we try to build in success, tailoring the learning progress to the individual strengths and difficulties of our children. And so we should, - if children are gong to learn with confidence. But, as we all know, there is a difficult world out there. To be able to fail and then to learn from that failure and try again, is a valuable skill we all need to learn and so do our children.
In addition, we all need to take the longer view. It is so natural to be very involved with the present, the immediate day to day problems and joys. But as all parents know, childhood does pass quickly, children do not stay young for long. Adolescence and adulthood beckons. One of my four sons has severe learning disabilities. He was fortunate enough to attend a wonderful school, where he was in a class of only a few children. He was introduced to a very rich world of learning and leisure activities. He had a marvellous life, school trips, holidays, regular horse riding and swimming, a lot of individual attention. Then I suddenly found when he was sixteen years old that I had a young man, who was nearly 2 metres tall and nearly 105 kilos in weight who had become accustomed to a very exciting and stimulating life. At that time, services for adults in the UK were very undeveloped and the quality of life which he then experienced was very different, - and very restricted. It was a traumatic time for all of us, particularly for Peter who couldn't understand why his life had changed so much. Eventually, a group of us parents got together and started to do something about it for ourselves as it was clear that the authorities were not going to, in the immediate future, at any rate. Many parents still have to face this difficult transition. And as services for children develop, the expectations of parents and their children are raised. Too often these expectations cannot be met and families and the young person find they have a very difficult road ahead, for which they are unprepared. You must of course do the very best you can to make the lives of children as fulfilling as possible. But I would ask you to remember this difficult transition time ahead as the children become adults and prepare parents and the young people for it. This is particulalry true at a time when services are just beginning and there is not the continuum of provision for both children and adults.
Victor made some statements in his paper with which I disagree a little. I think he was probably just saying them to emphasise a point, but I would like to discuss one or two. He mentioned that some illiterate families would perhaps feel unequal to the task of taking on the professionals. He also talked about professionals and parents perhaps taking a pleasant walk in the country as this would provide a more relaxed situation for them to get to know each other and for the professional to observe the child. I think there may be some danger in these comments.
I have found that no generalisation of parents can be made at all. I have met illiterate parents who were making the most wonderful job of raising their blind child quite naturally, without any help from anyone and without being able to read all those excellent books many of you in the audience have written. I also found many of them to be quite prepared and quite able to take on anybody and every body who opposed their own view of their child. In addition, they went to great lengths to find any support they needed, sometimes in very unorthodox ways. I have to say that in some cases it was the professionals who were unequal to the task of taking the parents on!
Home visits from professionals
can be a trial for parents in many cases. I know when I am in my parent
role,....the effect that some professionals can have on me. I remember
feeling that I had to clean my house from top to bottom at least twice
if some professional or other was coming to visit me. And I had to bribe
all the boys to behave while the visit took place. I knew that judgements
were being made about me and my home by the visitor even if they themselves
were trying hard not to do so.
Some parents will prefer
to meet professionals on a neutral ground - not home - not school. Home
visits, as I have said can be a pressure and there are parents who find
visiting schools equally so. Somewhere which is neither home nor school
can often be helpful and non threatening. Yes, I know this can be very
difficult to arrange, but there can be real payoffs in a neutral setting
for building more equal relationships and partnerships.
I also feel that we must be careful that we do not patronise parents in any way. Many parents know and others quickly learn that when professionals meet them, certain tactics are used. Professional have special ways of asking questions to get parents to talk, which the latter can find irritating. Parents also recognise the strategies which are supposed to relax them, such as the walk in the park that Victor mentioned. It is fine to go out for the walk, but do say exactly why you are doing it. For example - ' Shall we go to the park, - we can watch Jamie and see how he plays and moves around and we can talk about him together'
When parents want to meet
each other, this, as Victor has said, can be enormously helpful. From talking
to each other, parents can generate many good ideas and can be a real support.
As a parent, I can say to other parents of children with learning disabilities,
'I could have strangled my son the other day' and feel comfortable that
they will know exactly what I mean and not take me seriously (because I
really don't mean it!) but would I say that to a professional? I think
not.
But again the opposite to
the intended effect can arise. If another parent's child is making good
progress and mine is not, I can become very worried and depressed. Sensitive
intervention may be needed.
There is a common saying
in any discussion of families of children with disabilities. This phrase
is 'A handicapped child means a handicapped family'.
This statement became very
common in the 1960's in the UK and in the USA. It was said with the very
best of intentions. It was made at a time when services to families were
virtually non existent and it suggested that where there was a handicapped
child in the family, the family itself would have special needs. And in
a way, that is so. Families need practical help and often they need financial
help. They also need information about their child and about any educational,
medical and social support services that exist. The phrase 'the handicapped
family' did have a positive effect and services were developed over the
years. But many parents now feel that this phrase has gone too far and
has some unfortunate overtones. May I quote from some of the parents I
have met and who have shared their feelings with me;
' Once you have a handicapped child, you get put in a zoo. Anybody and everybody feels they have the right to come and look at you.
'People forget my wife and I are normal. They seem to think we have special needs too'
'I was me before George came along. I'm me before I'm a mother of a blind child. Why does everything I say or do be put down to the fact that I have George.'
All the attention I get makes me feel more alone than ever.
In many countries where services
are well developed, support is also offered to the grandparents and to
the brothers and sisters. This can also be appropriate. In many families
the grandparents have a great influence for good or bad. Now I am a grandmother
myself, I find that I have the time to talk with and read to my grandchildren,
to join in their imaginative games. Only a few weeks ago, I had to pretend
to be a patient in hospital and allow my 5 year old grand daughter to poke
me all over as she pretended to be a doctor. (That was better than being
a monster from outer space for my grandson!) I know that although I try
to support the rules of their parents, I am inclined to spoil them -(and
get 'told off' for doing so). Grand parents need to be going in the same
direction as the parents and the educators of the child with special needs
and they may need information and advice as to how to do this and how their
own special input can really help a child with a visual impairments. However,
they can also be subjected to the attention of professionals which can
make them feel, as one grandfather put it ' that 'I am different too.'
I know in my own family
that there have been times when my other sons (the ones that are supposed
to be normal) have perhaps had less than their fair share of parental time
and perhaps have suffered as a consequence. But the interest of some researchers,
who were trying to discover the effects of having a handicapped brother
or sister on siblings, and the attention of some social workers, welfare
officers and psychologists added further stress and angered them very much.
Support for siblings can be helpful. Opportunities for them to meet other children and young people in the same situation can give them the chance to talk to each other and find that they are not alone. But again, any attention which suggests that they themselves are 'peculiar' because they have sibling with a disability does nobody in the family any good.
There is, of course a problem if a region is trying to provide a service with only a few trained people, and there are many countries which are having to do this. This is of course, where team work becomes essential. Many of us know that there is a lot of expertise already developed in Laramara. I have seen some of the excellent leaflets and guidelines which have been produced. It is a time when professional protection must not get in the way of co-operation and collaboration. When we have produced something good, a booklet or some assessment or play materials, there is a temptation, isn't there, to keep it to ourselves. But we all need to share and remain unselfish and open handed if knowledge and understanding is to reach where it is needed most. There will also be ways in which to involve your parents further. Involving them would help to raise their status and strengthen the co-operation between them and professionals. Victor himself is an example of how parents can help to progress services and develop provision. Many parents will make excellent counsellors for others.
My final response to Victor,
is about when he discussed allowing and encouraging the child and young
person to be protagonists for the services. Yes, as some of the children
you are working with now grow up, they will be an invaluable resource and
will be able to describe their needs and which bits of the service you
provided were helpful and which were not. I know you will listen to them
just as much when they tell you what was not helpful as when they say what
was.
But each young person and
each family's experience will be individual and we need more than just
individual experiences to set a philosophy and policy of education and
provision. Their views will be essential but I would be concerned if their
views became paramount. We all have our individual and particular biases.
Policy and provision need to be objective, based on research and the collective
experience of many years, of which there is much in this audience.
You are at the beginning of your development, but you have such an excellent basis in Laramara. I have every confidence that your provision and service will develop, even it does have to be very slowly. Perhaps as you develop, you will be able to avoid some of the dangers that others of us have come up against when setting up services. And in this paper I have described just a few of these, - when providing a service for parents has a negative and not the positive effect that is intended. But all over the world there is an enormous amount of real co-operation happening between parents and professionals and I have been fortunate enough to see many examples of this.
We all say that every parent every family is an individual one. I think we must make sure that we mean it. As soon as we have any sort of provision, there is the tendency for us to expect parents to be grateful for what we are providing and to fit in with our ideas and to agree with our suggestions. As soon as we have- or think we have any understanding, any expertise, we become only too ready to pass it on, without really thinking if it is appropriate and helpful. And I think this is true of workers in both governmental and charitable organisations. Our provision must be flexible, ready for the unexpected. We must remember that each new family, each parent, each child we meet will have slightly different expectations of us. As you think about developing your policy making and provision planning here in Brazil, keep the words 'some parents' and 'families may want' in your minds. This should help you to will prevent provision from becoming too rigid. As you said, Victor, we do live in a changing world, - some of us find the pace of change a little too rapid for comfort and it certainly makes planning very complicated.
We can only hope that this important conference, held in Brazil, will do a little to raise the status of special education and will also help raise the status of people with visual impairments - and their families.