Alien hand syndrome

Mike has spent most of his life working with people with learning disabilities and their families - all age groups, pre-school to senior citizens, in both urban and rural settings. Here he looks back on some of the triumphs and tribulations of his career, the many changes he has seen, and the lessons learned from his experiences.

Key points

* Changes in educational provision, progressing to inclusion.

* Working with parents in partnership.

* Contrast between training and expectations of teachers thirty years ago and today.

* The role of the statementing officer.

* Comparison between statutory and voluntary service providers.

Student days

My first encounter with the concept of learning disability was academic. Part of my undergraduate studies covered the subject of special education. At this time, in the early 1970s, I had no idea that most of my career was to involve children with severe learning difficulties and their families.

In 1967 the Plowden Report on Primary Education was advocating the inclusion of children with special needs in mainstream schools: note how long it has taken for such arrangements to start being put into practice. However, certain children with IQs below 60 were not even considered educable. They were, however, 'trainable'. In other words they could carry out some useful menial, probably manual activities. They would be instructed in these skills not at schools but at junior training centres. Such training came under the Ministry of Health and had been regarded as appropriate since the setting up of Colonies for care and control in Edwardian times. I was not to learn of my own connections with such establishments until very much later in my career when I found out that my aunt had been at Stoke Park Hospital in the 1940s.

At this point I was entirely innocent - or ignorant, if you prefer - about disability. I had met some people with a physical disability; the mother of a friend of mine was blind, but I do not think that I had knowingly encountered anybody whose level of learning or ability to learn was significantly different from my own. Clearly, this was not because these people did not exist but because both they and I were cocooned separately and discreetly. They had minimal educational opportunities, even for basic literacy and numeracy. On the other hand, I was being taught subjects such as Latin and algebra. Our paths did not cross. They were at a church hall whilst I was at a school. Fifty years later we met when I ran a social club: some people were my contemporaries, others older than I was.

How's about ye? From England to Ireland and back

My first degree course was unusual and its location also very different. It was a Bachelor of Arts course at the New University of Ulster, Coleraine. This establishment was only in its second year in 1969, very new, and in many ways, incomplete: the campus was a building site and there was lots of mud. It was also small and friendly, but culturally very alien to my London home, being in the Northern Irish countryside near the sea - where my digs were - no halls of residence then. I studied education as a main subject. We considered sociology, psychology, comparative education and children's literature, as well as special education. The course did not qualify me to teach - a postgraduate training for that would be required.

Having matured in this rarefied atmosphere, I graduated in 1972 and returned to England and Goldsmith's College, London. There I had secured a place on a primary teacher-training course. I remember it as a very condensed and intensive year, difficult and demanding. I do not believe there was much reference to children with special educational needs. What we were supposed to do if we encountered any such children, I cannot imagine. In the event, this is exactly what happened to me - certainly some children who had difficulties with reading, and also problem behaviour. However, these problems were of little significance compared to those of the children with whom I would later be working.

I struggled through and succeeded in growing more confident and sufficiently competent to be awarded the status of a qualified teacher. Although, at one point, I nearly became an Inner London Education Welfare Officer (which would have been a completely different story), I was appointed to a village school in West Sussex.

Those who can - teach

I discovered that I had been wearing rose-tinted glasses. Every day, I had to face thirty-five seven-year-olds, the majority boys (less than one-third were girls). I received no official support or encouragement. These days I hope it would be a less fiery baptism. The roll certainly included special needs children - remedial readers, some dyspraxic, some dyslexic, some with emotional and behavioural difficulties, some immature and some with attention deficits. These were needy children to whom I could not give enough time, which frustrated me and, no doubt, them. However, I recently discovered that one has gone on to become an MP so perhaps this is a measure of success? There were no children with Statements (these documents had not been invented), there was no Code of Practice, no Inclusion Policy, no Parental Preference, no National Curriculum. I had no 'labelled' disabled pupil. No child with Down's Syndrome was in my class, or in the school. Where were they?

I was naive. One day I suggested as an essay topic that the children should write about their brother or sister. If they had none, they could invent one. Highly significant, in retrospect. As it happened I was aware that most had siblings though one girl I thought did not. She was a quiet, studious youngster with long blonde hair. Angela surprised me. She wrote movingly about her older brother who had special needs. What an eye-opener. From that day on, I have always held the brothers and sisters of disabled youngsters in great respect.

It became clear that I had misjudged my ability to manage such numbers of children. Whilst it was not an unmitigated disaster, neither the more able nor the least able were being justly served. I did try to differentiate: maybe I should have tried to teach the whole class instead. Would it have been easier or more difficult in the context of the prescribed curriculum of today? Who can say? At least the numbers would not have been so great. I think there are now systems for more induction for newly qualified teachers, rather than the 'sink or swim' approach which then prevailed.

Anyway, it was suggested that a change of school would be appropriate so I sought a new post, this time in schools catering for SEN children. The fact that I had no training or experience of such work didn't seem to matter.

Was I a 'special' teacher?

I was shown round a modern school building by the headteacher, who was retiring that term. I saw numerous children who looked 'different'; a very small bird-like girl was pointed out to me. Another girl greeted me extremely politely. I found out later that this was a ploy she had learned - a veneer that was skin-deep only. I managed to survive the tour and was appointed as class-teacher to a group often teenagers with severe learning difficulties. Whereas my previous classroom had been a hut in the grounds, here I had an open plan subsection of the senior wing, shared with two other groups. Storage areas were communal and we had access to specialist facilities such as a kitchen.

Initially, I tried to follow the timetable of my predecessor - simple literacy, numeracy, PE and creative activities. We also had singing and some use of the minibus for occasional forays into the community. There was a lot of occupational activity - 'keeping them quiet'. The teacher in the bay next to mine complained about the noise we made, especially when I introduced drama, which both the children and I enjoyed. There were individual plans. Some pupils were reading Ladybird books 'Peter and Jane', some children either would not or could not speak. Janice was an elective mute, and Sarah used signs. Dominic could clearly say useful words, such as 'cow'.

Gradually I acquired a better idea of what I was doing. I do not think I was offered training, told about courses or given books to read to help me. Maybe I have forgotten. Maybe there were not the quantities of reference materials available that would later fill my shelves. I had to learn from the children and what I could glean from helpful, more experienced colleagues. The children were my unfortunate guinea pigs. I hope I did not cause too much harm with my experimentation on them. Unknown to me, I was taking the place of a teacher who was seconded on a course. It came as a nasty surprise to discover her intention to return and resume her role.

New beginnings

So I suddenly had to uproot and decide where to go and what to do. Amazingly, I was in demand. I had two interviews and was offered both jobs - one in the Bedfordshire countryside, the other in a suburb of Bristol. I decided I would prefer the larger opportunities of a city after living in a Sussex village for two years and hoped it would turn out to be the right choice.

This school, where I was to stay for fifteen years, catered for children who were 'severely subnormal' to use the language of the time. My room, where I spent many of those years with teenagers across the ability range, looked out onto the adult training centre. The building I was in had formerly been its junior department. When I started there, it was a very large school with five parallel classes, each with ten to twelve children. There were another seven, I think, with younger groups. At that time, children with complex needs were not on the site.

Assistants be praised!

Now at least I had a classroom assistant, albeit only parttime. What wonderful supportive people these were on the whole. They really made a big difference to what you could do. They made such a contribution to the experiences of the children, and allowed the teachers to focus on individual targets. In the absence of Joan or Margaret, the quality of what could be offered was restricted and of course the ratio of pupils to adults would have been much greater. Without them, it was impractical to do vital life-skills preparation, road crossing, transport training, use of washing machine, shopping, cooking, self-care and hygiene. Many of these essential skills would be given little emphasis or priority in the national curriculum, but to my mind, along with communication and social skills, they underpin the ability of such children to contribute to the world and play a part in society.

'GERBIL' - the great education reform bill

When the secretary of State introduced the compulsory, content-laden, bureaucratic curriculum to be followed by everyone, our children were initially over-looked. Later, they were forced into the scheme. Surprise, surprise, it was revealed that they were achieving in many instances Level W (ie, working towards) or Level 1. So, from a child-centred, individualised approach that emphasised what a youngster could achieve, suddenly the system reinforced that the children had significant limitations - severe learning difficulties. Perhaps, this was why they were in a special school? Of course the politicians did not listen to the teachers and it was a long time before there was approved differentiation. It also took many changes of secretaries of State before teachers were given trust, respect and appreciation, and some financial reward. It is ironic that the politicians who at one stage took autonomy away from schoolteachers, now preach about devolving power back to schools.

The big wide world

Outreach and integration was in its infancy. We linked with other schools, both special and mainstream. The walls and fences started to come down, literally, in some cases. One girl, visually impaired and quadriplegic, had a beautiful singing voice. It was possible to include her at a local primary school in their lunchtime music club. This involved extra work for staff, but hopefully was beneficial and enjoyable both to my student and the other school's pupils. All the children had talents - if they could be spotted. Sometimes they were well hidden, or took a long time to emerge, but they did exist.

We crossed a muddy field to a comprehensive school for art sessions, science lessons and to use their pool when ours was awaiting repair. We went into the community as much as possible: Friday, the sports centre; Tuesday, the public pool; another day conservation work; another group used to go to the local urban studies centre.

The oldest group transferred to the local FE College, firstly being taught by me as a link to school, later becoming full-time, independent students. They were expected to take on responsibilities. They were challenged as to what they were doing, and why. If they did not fulfil their commitments, there were consequences as in real life. Food had to be bought, prepared, eaten and the washing up done in a certain timescale. They learned that if it was not checked, it could be burnt or underdone.

Beyond the horizon

Then there were the residential weeks, often in Wales. The staff never relaxed but the students learnt a lot about planning, organisation and co-operation. It was hard work but also fun.

Provided there was a funny side to be seen, and a good team, it was possible to have a great time. Public awareness needed to improve. 'You must have a lot of patience' was a frequent comment. Yes, I thought, not least because of your patronising attitude. There was also ignorance. For example, a proposal to turn a large house on a main road opposite a cinema into a training base to prepare adults with learning disabilities for independent living resulted in a public protest meeting being held. I pointed out that these people already lived in the community: had nobody noticed them? The centre opened - and the local children were not terrorised waiting to go to the pictures.

London calls

From 1990, my third incarnation was working in a local education authority in London, as a Statementing and Placements Officer. Again, during twelve years in this environment, we coped with political change. Government and council changed hands. Priorities varied. There was seemingly endless restructuring, none of it very beneficial to the 'service users'. Management adopted draconian measures and performance indicators were scrutinised. Some staff could not take the pace and fell by the wayside. Others, more resilient, rode the waves.

We tried to work with parents. Sometimes it was enormously difficult because they were not willing to compromise, and we had no authority to be flexible.

The rate of appeals to SEN Tribunal rocketed. For the best part often years I had managed single-handed to write Statements, find placements at schools (all over the country not just in-borough), and attend hundreds of reviews and other meetings. Ultimately it required four people to do my work. Statements became longer, more elaborate, and more specific. There were more challenges, and queries. There was more control and less support from above. There was a growth in delegation and a loss of responsibility.

Inevitably, relationships deteriorated - between officers and schools and officers and parents. Confrontation seemed to be preferred to conciliation. The budget was 'God', and 'God' controlled us.

How to win friends and influence people

Having a supportive team made a huge difference. Also humorous moments, such as when one mother said about her son: 'He has a very photogenic memory'or the typist who amended my sentence 'I wish William well for the future'to 'I swish William well...'.

We had success stories. For example, eventually finding provision for a child with complex needs, persuading a parent that a local special school was appropriate, and managing to enrol the boy - hooray.

Those children who attended mainstream schools had support allocated through a complex banding system that I administered. If the evidence was there, it was straightforward. But often it took hours of agonising; sometimes cases came back several times. We sought to be fair, reasonable and transparent. For some, the number of support hours was never enough - and trying to take away any time would unleash howls of protest, hostility and criticism. We were much more generous than neighbouring authorities, but never received credit for this nor for our sterling efforts.

Across the great divide

Ultimately, the opportunity arose for me to work in the voluntary rather than the statutory sector. Hopefully, I thought, there would be less emphasis on red tape and a more enabling attitude to developing services and activities. My appointment came at about the time of the implementation of the White Paper, Valuing People. My work entailed making provision both for children and adults with learning disabilities, and their parents and carers.

I succeeded in setting up a new Keep Fit Club for adults, extending the holiday schemes for students and children, and initiating a forum for parents of disabled children of school age. I survived several different Chairs of Trustees, with varying styles of management. I attended depressing, negative meetings. Many proposed initiatives were dismissed, and my knowledge and experience were sadly undervalued. I found it disappointing that staff in the voluntary sector should be so disrespected.

I took satisfaction from the individual families I was able to support and whose concerns I could address. I continue my personal involvement as a facilitator of a circle of support for a disabled young man whose opportunities in life are thus enhanced.

Looking forward

As for the future, I feel concerned that the 'professionalisation' of the voluntary sector will drive out much of the goodwill and many of the volunteers. The financial dependence of charities on the statutory sector jeopardises their existence, and their independence of thought and action. I fear that many of the activities and opportunities which could be provided will be hampered by legislation, health and safety, risk assessment, CRB checks and so on.

There is a real danger that the core purpose of these organisations will become forgotten in the process of 'modernisation', and that people with learning disabilities will be little better off as a result. I sincerely hope this will not prove to be a case of running to keep up, only to find the winning tape has been moved.

At least people are not shut away as my aunt was 60-70 years ago. It has taken a long time to make such progress as we see today. We need to work together and be positive, to value people and continue to improve opportunities for people in order to build a better future.

References

Department of Education and Science (1967) Children and their Primary Schools: A Report of the Central Advisory Council for Education (England). London: HMSO.

Department of Health (2001 ) Valuing People: A New Strategy for Learning Disability for the 21st Century. London: Department of Health.

Copyright Pavilion Publishing (Brighton) Ltd. Apr 2005
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