Abstract
The presentation will outline the growth of 'Karuna Vihar' 'A school for children with mental handicaps', which was founded by the mother of our first student It will discuss: The general provision of special education in India, with particular reference to Dehradun, the difficulty in securing funding for schools catering to children with special educational needs and the scarcity of professionals in all related disciplines and at all levels. The role of parents as instigators of provision will be highlighted. In addition it will consider cross-cultural attitudes to disability and concepts of special education. With reference to Karuna Vihar, the mismatch between the expectations of parents and the methods used in school, the challenge of introducing play and activity based learning, and the inclusion of children outside of the original frame of reference, will be discussed. 'Time out with a difference' -The development of behaviour management strategies rejecting not only the culture of violence(an issue which cause a stir when our director raised it at a national conference) but also that of extrinsic rewards.
Six years ago Jo Chopra, an American woman living in India, decided to open a special school. Her daughter had mild cerebral palsy with associated mild mental retardation and there was no appropriate school in the small town that she lived in.
The one school that might have done had seventy children being taught in one room. There were three other special schools in the district; one each for visually and hearing impaired and one for children with severe learning difficulties.
At the time, Dehra Dun had an estimated population of 500,000.
In the West, discussion on inclusive education centres on issues such as segregated schooling and equal access to all areas of the curriculum. In India, for the majority of children with special needs, inclusion means being part of the education system at all.
The low priority given to the funding of special may be difficult to dispute if measured against the needs of the vast numbers who do not have access to such basics as clean water, sufficient food or medical facilities, but when the luxury enjoyed by so many of us is considered, then the lack of provision is less easily justified.
In any event Jo, like so many parents before her, was not prepared to wait whilst special education took its turn a development queue. In this way many of India's most renowned special education institutions were founded, beginning as small schools and growing into organisation providing a range of quality services.
I became involved in Jo's project through the British organisation VSO, to whom Jo had applied for someone experienced in working with children with mild learning difficulties who could train local people in appropriate teaching methods.
The job form stated that getting a volunteer would be the impetus to start the school so I imagined arriving to find a school in its very early stages with a few children (in a setting I could not imagine at all), working in copy books on basic maths and literacy skills. I felt sure I could manage without the toys and apparatus I was used and make do with local materials. I applied with confidence.
Five months later on the train journey from Delhi to Dehra Dun my confidence began to waver. Never mind no toys, what would I do without the support of experienced colleagues, without books, without even a common language? By the time I arrived in Dehra Dun I had convinced myself I should just tell everyone I had made a mistake and just go home.
I recovered a little of my confidence at our first official meeting when I learned that two of the three people I was to train had professional qualifications.
One had just completed a postgraduate special educator course run by the Spastic Society of Northern India. A second person, a B.Ed, had spent many years teaching Montessori method to graduates. Neither had experience working with children beyond that required by their course. The third, an 18-year-old high school graduate, had one month's experience at a local residential school for children with severe learning difficulties. Another person had been sent to Delhi for training at the Spastic Society of Northern India and would join us after completing the one-year course.
We also had the unbelievable luck to have the voluntary services of a Developmental Paediatrician, originally from the UK but like Jo, living in India with her husband and family - things were looking up.
However, I also discovered that the school did not as yet exist in any form. I was to be responsible for setting it up, as well as it's day to day management.
The school governors had already set the criteria for admission. The school would primarily be for children with mild/moderate mental handicap although children with mild physical disabilities could be accepted so long as they were independently mobile. Children with severe emotional/behavioural difficulties, autistic children or those with severe mental handicap would not be admitted.
Given the lack of experienced professional support I was anxious to work well inside my own experience and readily agreed. Numbers would be limited to 25.
Whilst this would barely scratch the surface of estimated need, we agreed that in order to change the predominant perception of the disabled as hopeless people it was essential to avoid overcrowding
The setting for the school was a four-roomed house already in use in the evenings as a play and activity centre for local children. The yard contained a slide, a climbing frame and a sandpit. Inside were a few toys, musical instruments, books in both Hindi and English and art and craft materials.
More than I had expected but considerably less than would be available to most classes of 8/10 children in the UK.
The next day whist waiting for the teachers to arrive for the start of training, I thought about the task ahead. The curriculum, timetable, assessments, checklists, reports, reviews, all these things had to be established. What I did not realise was how much time would be spent on training in more basic issues such as safety. The teachers arrived and the training programme began.
Discussion revealed the differences in our experiences of education both mainstream and special. What was an appropriate curriculum? Maths and literacy obviously. Cooking and gardening were not disputed and music dance and art were appreciated for the role they could play in language and motor development, but the mention of geography and science was met with raised eyebrows.
How could children with special needs possible study these difficult subjects? Considered as factual subjects, useful only for passing exams, they were rejected as a complete waste of time for children who should be learning street names and practising dressing skills. The gap between our viewpoints was too wide to bridge at that point, so I let the issue drop. It would be four years before I successfully introduced these subject to the curriculum.
When the first child came for assessment I was faced with the difficulties caused by my inability to speak Hindi. Using an interpreter was far more difficult than I had imagined. Bittoo and his mother were anxious when I spoke in English wondering what judgement I was passing on them.
With the loss of spontaneity conversations became a series of complex questions and answers, denying me the opportunity to develop a relationship with either mother or child. I was unable to make out if his vocalisations were speech sounds, words or sentences. However, observation of play, drawings and general behaviour were still open to me and would allow me to make a broad assessment of ability.
But Bittoo's mother did not want him to play or draw. Whatever apparatus he showed interest in, she called him to sit down.
We gave him a paper and pencil. His mother spoke to him and he drew a large letter 'A'. She then manipulated his arm and together they wrote 'B' and 'C'.
His efforts were duly praised but when I asked through an interpreter for him to be allowed to use the paper freely both became anxious. What else was expected of them, have they failed the test?
I learnt later that the ability to write 'ABC' is an entrance test used by most schools even for children as young as 3. In a country where education cannot be taken for granted very few children are given paper to 'waste' on scribble
Perplexed by the emphasis on play Bittoo's mother was relieved when I asked her to return to see our doctor. A doctor would examine him, give medication perhaps suggest an operation, test for IQ - all the things she understood.
She was disappointed when this doctor also used play for assessment and told her that there was no operation for Bittoo's condition even in America.
However her disappointment was balanced by the time this doctor gave to listening to her concerns, it was for her, and for almost all the parents who came after her, the first time they had received counselling. They accepted the place that was offered. The use of play as a teaching medium remains a problem.
At each assessment we demonstrate how play in the sandpit transforms mathematics from a meaningless exercise into a useful skill. How climbing helps gross motor development and scribbling the ability to write. But often these explanations are accepted at the time they are given only out of politeness. They have brought their child to study not to play and many do not take up the places they are offered, despite the fact that their child has continually failed in the ridged curriculum offered in the mainstream schools and is repeating kindergarten for the fourth time.
But some parents know their child needs something different even if they are unsure what. Vishal's parents were among these. An 8-year-old child with moderate learning difficulties and very mild cerebral palsy, he had never attended school or received any intervention other than medication for seizures. This story was to become all too familiar.
During his assessment it became apparent that he was on 3 different types of drugs including phenobarbitone and Dr Linda began a long campaign to change his medication to one that did not have such a marked effect on his behaviour.
Among our earlier admissions he was the first with behavioural difficulties at a level that completely fazed our inexperienced staff. When I had discussed behaviour management techniques in the early workshops, I was asked whether, when all else has failed, mild corporal punishment could be used.
In my experience corporal punishment had been so long rejected as part of behaviour management I had not even thought to mention it. However it is still widely used in India including in some special schools, although the Government training institute for mental handicap does not advocate it.
My reply had been an unequivocal no. Even more controversially I had rejected the use of star charts tokens and other form of extrinsic rewards.
The teachers were eager to see how I would manage Vishal's hyperactive aggressive behaviour without recourse to either of these familiar strategies.
After a couple of weeks when Vishal mostly ran around outside, whilst the rest of the children were safely inside and vice-versa, he began to show some interest in group sessions but was unable to control his behaviour for even a minute. I decided the time had come to intervene.
I did this by removing him from the group immediately he became aggressive (This usually involved picking him up and carrying him). Away from the group I sat him on the floor. Sitting behind him, I enfolded him in my arms and legs and rocked him gently from side to side, singing or talking to him all the time, usually managing to move my arm before it was bitten.
The emphasis was on affectionate physical contact rather than language. We sat like this often for up to 15 minutes until he was able to rejoin the group. I tested this by offering him a toy; if he played with it he was ready to go back, if he threw it we remained sitting.
My experience in the UK has led me to conclude that, whatever the original intention; 'time out' becomes a form of punishment, at least from the perception of the child. S/he feels rejected and resentment builds up over years, leaving behavioural difficulties unresolved.
Time out at Karuna Vihar involves an adult actively supporting the child by use of close physical contact. Depending on the child it can be an embrace or holding hands, but it is always there.
The intended message is that it is the behaviour that is unacceptable not the child. Self-esteem is maintained and often improved. One of our favourite stories is of how Vishal in his first year at the school refused to look at his image in the mirror and threw photographs aside saying 'mad'.
He now proudly says his name when seeing his image. When his parents were finally persuaded to change his medication the transformation was complete. Complete, that is, except that Vishal is still an active fun loving child who has not become cowed by fear of physical punishment or resentful of adults who rejected him.
Star charts and tokens are rejected in favour of social rewards, which retain their value when that of other rewards has been lost. Not all the children who came for admission could be accepted. However justifiable we felt our reasons for not admitting a child, we all understood that when we sent them away they had nowhere else to go, making it an extremely painful process.
We were all deeply affected by the stories parents told and often felt we should made an exception for just this one child, but away from the eyes of the mothers and grandmothers we usually managed to remember the reason behind our decision and stick with it.
But when a child with very severe cerebral palsy, living only one hundred metres away was brought to school by his mother, we all agreed we must do something- after all he was a neighbour. We gave him a part time place. Gradually we accepted more children outside the original criteria just because they kept coming and our resolve kept weakening.
We now have children with severe mental handicap, severe emotional difficulties, and P.D.D. as well as children not independently mobile.
Two years after opening we still had not been able to secure the services of a speech therapist or physiotherapist who would be prepared to use our child centred methods. We substituted for them to some extent by training our school caretaker to carry out some simple physiotherapy programmes.
We employed a woman who had completed a short diploma course in the education of the deaf, who worked on developing speech in the children with cerebral palsy. However there was no substitute for the social worker, the serious nature of whose absence became agonisingly clear when I became convinced that one child was being sexually abused and suspected non-accidental injury in another case.
In just over two years we had reached our target of 25 children and began a waiting list. Training had moved on from the stage of after school de-briefing session to more systematic monthly workshops. My lack of Hindi was an increasing problem as we now had some teachers who did not speak English so each discussion of any topic took at least twice as long.
About this time we finally managed to add a speech therapist to the staff and so with a multi-disciplinary team we could provide a home management service for children who could not attend the school.
A major aspect of the work of the school has been to go out into the community directly challenging attitudes to disability, which in India is often still considered shameful. One still hears horror stories of a handicapped child being hidden in a back room lest the neighbours find out. When we in the West here such tales we are shock and appalled. But are we so very different?
The moment a pregnant woman learns that her baby will be born with a handicap - from Down's Syndrome to Haemophilia - the pressures begin. The so-called 'responsible' choice is clear: abortion. Where is our tolerance and acceptance then? Who is the more excluded - the child in the back room or the one denied life itself?
The school has now been in existence for four years and is continually growing in an attempt to include more children.
We are planning immediate expansion, moving our senior children into a nearby building, and the opening of a second unit linked to the town's Mother Theresa orphanage is imminent.
We have also begun an outreach programme in a nearby village.
Our long-term goal is a purpose built school with a vocational unit and a training institute.
Our dream is your dream - Inclusion for all.
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