(prepared for the Royal Ballet, July 1998)

I communicate easily, as easily with my mother as you do with your tongues and I understand your tongue. The trouble with my waggly hand is that only one person at a time can "hear" me and it thus has to be relayed on by a vocally-proficient person. It is a means of communication that has been habitual to me now for around 6 years. I am very sensitive about its individuality because it gives rise all too easily to scepticism about my talents. I am therefore referring you to my long-time friend and therapist, Wendy Clarke, Head of Paediatric Occupational Therapy at the East Kent Community Healthcare Trust, the Mary Sheridan Centre, New Dover Road, Canterbury, telephone number 01227 - 783043 who is always happy to explain me.

It all began with play-times. I was eager and alert and couldn't sit by myself. I would reach for things and drop them because of being very weak muscled. And so a lot of the time I sat on my mother's lap and she helped me to hold on to things and in doing so she could feel my intention: eg trying to push a toy teapot towards a cup, trying to heap sand into a bucket, trying to steer a green felt-tip pen towards a grassy playing field in a colouring book, trying to put a doll in a bath, trying to turn a page of a book, etc etc etc. Thus at two and three years old I could demonstrate easily that I understood all manner of things but only if people held me and enabled me to show them. By myself I made no progress at all despite daily practising all manner of therapeutic horrors. (I started therapy at 14 months)

The problem is that my disability has never been seen before - I kid you not. Guy's and Great Ormond Street have nothing on record like me. So I have no path to follow but my own, and nothing that is designed for other disabilities, like cerebral palsy, works for me. My OT and my mother have extensively over the years explored all manner of options that made me feel a terrible failure. In fact being with other disabled people frequently makes me feel far more inadequate than being amongst able-bodied folk because there is such an expectation of small gains and giant leaps (à la Neil Armstrong). When I was 4 I had a medical assessment that described me as very determined and self-willed. The doctor could feel me drawing pictures and making choices. She thought that there would be many years of debate about my mental status because I was only able to communicate with those I trusted. Boy how perceptive she was! She said that I was one of the most disabled people she had seen in 25 years of practising as a hospital doctor and that my disability seemed wholly intractable. Then she went on to recommend that I attend a mainstream school. My OT and my speech therapist and my physiotherapist and my consultant paediatrician and my educational psychologist all agreed because they all knew that I was already showing signs of being more than averagely intelligent and highly motivated to succeed. So off I went to a mainstream Infants' school just down the road from my home with a one-to-one helper.

Prior to this at 4 I had moved on from picture boards as a communication device to a word book and then to a letter board. With all these I had to put my finger onto what I was wanting and that I could only do if I was held in a particular way (just as with my playing earlier). The Spastics Society (as it then was) designed a whole lot of electronic switches for me and demonstrated my difference from spastics very easily - I could not learn to use anything within their imaginations all by myself although I could demonstrate my understanding of what I was trying to do. They recommended that I cease to be frustrated by the continual search for a gizmo that obviously did not exist. The search began for something that would make my life easier rather than something that would make me independent. I remain in touch with people who are expert in augmentative communication technology so that new developments can be borne in mind. At present I am being advised not yet to hold my breath at the outside chance sometime next century of brain wave technology becoming efficient.

The move to a letter board was the single most important day in my life. 2 things happened that day. One was that a speech therapist visited from a company making talking communication aids. She had been before and loaned us a small box with 8 pictures on it. She thought it was too limiting and that I needed a far greater degree of complexity because of being normally intelligent. She suggested the model with 125 boxes on it and asked my mother what the 125 most important concepts for me might be. She expected my mother to render these pictorially and to update it each week as I would rapidly change as any 4 year old might. My mother was horrified. She sat at the kitchen table while dad made tea explaining to him that this was just plain daft. I was sitting on her lap as usual. She described how I knew quite a lot about words and could read some words on the page. She drew an alphabet carefully on a large piece of paper and told my dad that if I was normally intelligent it would be far better to make me literate as soon as possible because if I could spell I would only have to make a choice from 26 letters rather than from an ever increasing number of pictures and/or words. I already had a page of words listed in my word book that had 40 or 50 emotion words on it because I was so avid about that particular page. The pages with colours and weathers and foodstuffs and so on were thinner with words because I responded less enthusiastically to them, although the weather one had drizzle and dreich as well as rain pouring shower etc so I was quite a little fuss-pot even at 4.

As soon as mum drew the alphabet out I was o so keen to use it. My mum said to dad that in my brother's class (where she helped one afternoon a week with the special needs children) there was a boy who could not work out at 7 what the relationship between letter and sound was. She illustrated this by saying that he did not know what letter "bed" began with even when she emphasised it when she spoke. I lurched forward and tried to hit the paper. My parents responded and asked me to answer. I showed them that I could spell all sorts of simple words without any teaching at all. Stuff like bed, dog, cat. They were as excited as I was. I felt a huge huge huge excitement and it got more exciting every day after that because I could begin to say things that I wanted to say rather than only answering choice questions. I soon rejected choices altogether. I just wanted to spell spell spell. I found it tough going with the letter board because I had to lift my hand and place it without wobbling and then again and again and again to spell a word out, and mum had to write down each letter because my spelling was a tad juvenile and full of guesses and it was slow and easy to lose track otherwise. I used to spell things like jrffe & u do it & b4 & me me want joos. My mother recalls me spelling out "why men do rugby all mud horid" when she was convalescing from pneumonia and watching tv more than the more active playtimes that were usual.

Always I was drawing too. I loved to draw. I loved holding a pencil and being held so the enablers arm was slack and I could steer the pencil that I could not alone hold to draw faces and dragons and aeroplanes and birds, and paint and colour them with a sloshy watercolour of my own mixing. I sat for hours painting with my mum's help both at home and at nursery and at playgroup. I painted every day. I wish I still did. So I expected to learn to write too and did. I wrote titles on my drawings eg dragon whale caterpllr robin and of course I was encouraged to put my name on things. Mum soon realised that I could write quicker than spelling on my board because the movement was a sliding one which is easier for me. But I continued with both simultaneously and my wordbook too for quite some months.

When mum was in hospital with the pneumonia I mentioned a moment ago, I spent long days in a nursery that was used to me because I went with my mum one morning a week and was left there one afternoon a week with two monks who played with me not very adeptly. The manager became my one-to-one helper and she was doubtful about me, thinking my spelling was my mother's wishful thinking, but she held me so as to see for herself and soon found that she could feel all my little movements. All my writing at this age was done on A4 paper with large arm movements and a childish scrawl of lower case letters in a printing style. She wrote to my local education authority with enthusiasm telling them I needed a chance to participate in mainstream because I was very bright.

And so as I said I went to school with a one-to-one helper that they provided and mum trained in all my care and communication and gym and play techniques over the course of about 3 weeks in the classroom. My LEA had dragged their feet so long that I was nearly 3 terms late in going to school and I was very anxious in case I was far behind the other children. I was very diligent and worked very hard as ever I could. I had to spell out all the answers to the questions that other children answered out loud and it quite escaped my notice for a while that they could not spell at all. After a few weeks mum was summoned to the school and the teacher asked if she knew that I was gifted? She described me as having a photographic memory and having skills in drawing and sums and spelling and language and so on. About this time I started clamouring to my mum about the din of music in my head which I sort of thought was a normal phenomenon. The school bought in an advisor who found me to be gifted in music too. The music came to dominate my every thought and it plagued me considerably. Summer came and I spent time in the quiet of the garden where my music banged less hurtfully in my head and it could sort of be stretched out in my mind and shaped into structures. When I went back to school aged 6 I couldn't settle at all. I wanted to know more about everything, about science and the nature of matter, about maths and definitions of infinity and zero, about history and sacrifice and metaphor, about translucency and about virtual images and light, and about metamorphosis and animal consciousness, and there was no work at all. It was still an infants' school and there was no work at all. I started running away into my imagination and refusing to participate in all the sillinesses of 2 + 2 = 4 and I ran into my imagination and composed a 4 act ballet called JANE. I ran so far into myself that I could not drag my self back. I could not respond. I did not want to. I did want to and I still could not respond. I was somewhere beyond reach in a world of aloneness and tears. I hurt even thinking of it now. It was my first clinical depression. The school were horrified by the change in me and told my LEA that I required a personal tutor and a base within a secondary school, such was the maturity of my thinking.

The LEA had never known of such a thing. Not merely was I 6 but mute and disabled, but they set about approaching grammar schools in the local area and I visited 4 of them. The Head of one said I would romp through in 2 years and my maths was already conceptually beyond school maths. I was horrified. Where did I fit in? It's been a very hard few years finding that I don't fit in anywhere. Schools did not want me if I was to be their responsibility. I had left my infants school because of my depression and because my assistant resigned, and no new one was appointed because of uncertainty about where I would be based. My LEA got me a man from Kent Music school to help get the din out of my head meantime. I started by writing a song for John Tavener but I think this all begins a separate tale which you can hear another day...

My writing got smaller and faster and more joined up. I had already in school abandoned paper and used the reverse end of a pencil to trace shapes out because as I was constantly in touch with my speaking enabler it was much easier for her to feel than to watch my writing, as well as being faster and more portable. Later I abandoned the pencil and just used my hand as now. My OT and a baby sitting friend learned to feel it. My LEA never found a school or provided a new enabler and I took the case to the local government ombudsman. He reported last summer and Kent County Council last September accepted his findings of maladministration amounting to injustice because they had failed me. Unfortunately the LEA has again this year not provided for me and the ombudsman has begun a fresh complaint into this. So I am in the unenviable position of not during the last five years having been given opportunity to communicate other than through my mother for virtually every single thing. Unsurprisingly this has led into a lot of horrid horrid scepticism and this is what has been the greatest injustice of all.

I had my 2nd clinical depression when the RAM unceremoniously chucked me out. They would not communicate with my LEA, with my parents or with the Tavistock Clinic where I was a patient and so I cannot say with certainty that they became sceptical of me but I can tell you that they turned from all-embracing warmth and enthusiasm to sneering and rudeness and cold indifference. I have not yet told you that my mother whom I communicate my music through not merely is a non-musician but o dear me once famously remarked that she would never go to a ballet because she had no interest in such stuff. I have led her a very pretty dance or two since then. Ha!

My internet mag got me out of my depression. I could write to folk on the disability net who told me not to let the bastards get me down and from whom I could also hide my age easily at least at first.. I found it was fun talking again and I'm trying so hard to believe that folk are worth trusting. I am still afraid of being hurt. I love being me but I am afraid of being me at the same time because I am too singular and it's never going to stop, the stress of it all is never going to stop. I get used to disappointments and rejections as a young editor and have to get on and to cope. I hope I thus build some greater resilience than I've hitherto had.

My parents are presently contesting a new proposal from the LEA that runs against my consultant's and my tutor's advice, which is to send me to a residential special school for 7-15 year olds. They have not one jot of advice saying it is wise but about 2 dozen voices are clamouring on my behalf saying that it is inappropriate. I am very honoured by the eloquence with which so very many people I know are leaping to my defence and I have no right at all ever to sink out of sight into oblivion when I am buoyed up by such friendships. I want to repay it by bursting forth my talent. Would that my LEA would give me opportunity to train new enablers as has been recommended upon so many occasions... instead they want to tidy me away and out of their hair, without so much as a one-to-one assistant guaranteed.

Questions, as I said, should be directed to Wendy, or to my parents. I really don't like talking about it all.

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