DAVID BLUNKETT

There can be few, if any, disabled people who can put their hand on their heart and say that they have never faced or experienced discrimination throughout their lives. The real issue is how we deal with it and above all the influence we bring to bear to ensure that fear, uncertainty, or downright prejudice, are swept away.

There are those who think that the Secretary of State for Education and Employment - who also happens to hold responsibility for disability rights and equal opportunities - is immune from the same experiences as others. This is not true.

When I was young I experienced exactly the same hurt, the same screwed up feeling inside, and the same anger, which other young men and women are feeling at this very moment. I say "young men and women" because time heals, rough corners are rubbed off, and whilst the urge to bring about change does not die away the ability to deal with the problem improves with time.

This is not about "accommodating" prejudice, but about recognising some of the causes.

Some of it is ignorance. When a mother and her child crossed the road and I heard them say "Don’t go near him you might catch it", I felt nothing but blinding anger. At the age of 13 it hurt deeply and it was difficult to cope with. Equally, as people literally picked me up by the elbow to carry me across a road when I wasn’t intending to do so, the tendency to lash out verbally and to abuse them was overwhelming.

It is only a little later that you reflect on why people are taking such steps and why they make such remarks or inappropriate and clumsy actions. The truth is that very often they don’t know what they are doing. They have literally no experience of people with disabilities.

This is why integration as often and as appropriately as possible for youngsters in these early years is so important. Wherever it is appropriate, for the youngster themselves this means schooling. Where it isn’t, then every effort should be made to ensure that the specialist setting has good connections with mainstream schooling, and above all that leisure and social activities are organised in a way that doesn’t separate people off from their peers.

But of course it is not just ignorance. It is often a fear of the unknown. Ensuring that people understand that people with disabilities are "normal", but have a particular "challenge", is the first critical step to ensuring that attitudes change, that true integration can be achieved, and that the next generation do not have to put up with the inappropriate actions and approaches of others. Actually, being nice to someone who makes a mistake, finding some form of words which help them out of their problem, and even gently putting them straight, can help.

I can probably do more by doing my job well, by working on equal terms and not being seen as the representative of disabled people, than I could ever do in any other way. Just doing the job and convincing people that it can be done well is critical. Often I overdo it. I never want anyone to say "He did that badly because he couldn’t see". But I can get across a change in attitude. I can tell people that they should always approach others in exactly the same way that they would expect to be approached themselves. If in doubt "reverse positions, think of yourself as the person you are approaching", seems to me to be good advice.

So, those who have a challenge to overcome or an obstacle to set aside, have an obligation as well. That is to understand why people are making the mistakes they are and how best we can ensure that they get it right in future. If they stomp off saying "All blind people seem to me to be extremely ignorant and bad tempered", we have not done a great deal of good. Equally, those who are deeply offensive in the way they may approach someone in a wheelchair or who has a physical deformity will only do the same again unless we somehow get a message across to them that here is a person just like themselves who does not want to be patronised, and who finds the paternalistic and sympathetic approach deeply hurtful. This takes some thinking through. Often you don’t have time to do it, the circumstances have come and gone and you are left simply seething.

I am lucky. I accept that I am. It rarely happens to me now, although on occasions people do think that there is something wrong with my hearing or that my legs don’t work - I imagine that for those whose legs don’t work, people often presume that they can’t see or hear properly! The lift doors clank to and some well meaning soul next to me says "The lift doors have closed". What do I say? "Yes thank you very much, my hearing is perfectly OK"? Perhaps not. But "Yes those doors do make a real clank when they close don’t they?" might just get through to them.

So now here I am, Secretary of State for Education and Employment, with responsibility for special educational needs, for disability rights, and for the introduction not only of part three of the Disability Discrimination Act but also the setting up of the Disability Rights Commission from this April. I also have responsibility for implementing the recommendations of the Disability Rights Task Force - we will do this for the education elements later this year in a Special Educational Needs and Disability Rights Bill.

But legislation is only part of the task. Changing hearts and minds (the See the Person Campaign) is another key element. So is the work we are doing with employers. Someone who is bright and intelligent, well educated and socially adjusted but who can’t get a job, is a person who is discriminated against. Equal opportunities has to be in practice and not simply in theory.

When I met Hero in my office last year I was deeply impressed with the message that she had been putting across - literally putting across the world. The message of equal approach, of equal opportunity, but also of equal exposure to all the normal influences. In fact I remember saying to her just how important it is that I could be robust with her, just as she would expect to be robust with those whose behaviour, actions, or attitudes, drive her insane.

And yes, not just robust, forthright, and equal in opportunity to speak one’s mind, but also equal in toleration as well. To tolerate the failings of others, but to ensure that all we do prevents the next generation from having to be so tolerant, as the cause and not just the symptoms are swept away.

That is why everyone who experiences prejudice or discrimination in one form or another can themselves become an evangelist for change. Just a small drop of water on the stone that changes the face of those who live and work around us, making the world a better place in which to live, work, and have our pleasure.

I was born in 1947 in Sheffield. My mother and father were Doris and Arthur Blunkett. At the age of four I attended Manchester Road School for the Blind, a boarding school, the only option at the time for blind or partially sighted children in the region. At the beginning of 1960, at the age of twelve, I moved away from Sheffield to start secondary school at the Royal Normal College in Shropshire.

At 16 I transferred to the further education branch of the College at Albrighton Hall. It was also the year I joined the Labour Party. There was no provision for sitting O and A levels because the Principal at that time did not ‘believe’ in them and the curriculum was not geared to them. That was tantamount to a challenge to me and five of my classmates - we enrolled for evening classes at the local Technical College in Shrewsbury.

In 1967 I joined the East Midlands Gas Board in Sheffield as a clerk-typist. Once safely installed, I became shop steward and I also persuaded them to let me have day-release to attend the local further education college. Each week I spent a day and an evening studying for the National Certificate in Business Studies. I spent a second evening studying A level Economic History. Having passed that, I re-sat A level Economics (which I had studied at night school whilst at Albrighton) to gain a higher grade. I then took A level law.

I read Politics and Modern History at Sheffield University. During the course of my first year as a student at Sheffield University, early in 1970, I was elected to Sheffield City Council

I was first elected to Parliament in June 1987, representing Sheffield Brightside. I was Opposition spokesman on Environment (Local Government) from 1988 to 1992, then Shadow Secretary of State for Health from 1992 to 1994, and Shadow Secretary of State for Education and Employment from 1994 to 1997. When the Labour Government was elected on 1 May 1997 I was appointed Secretary of State for Education and Employment.

I have three sons, Alistair, Hugh, and Andrew. Apart from my interests in education and employment, and local government, I enjoy walking, sailing, music and poetry (although I have little time at the moment to indulge in these pastimes).

In Mag 1, I described the pain of being so disabled I am "locked-in" and the realisation as a young child that it is a permanent state. In Mag 2, I waxed lyrical upon the elemental joys that buoy me up, and in Mag 3 I wrote about Oxford Envy. In mag 4 and 5, I just got too busy.

In Mag 8, I promised to write an essay on fear, but lo! some eagle-eyed avid readers spotted an omission - no essay. I'm plastering it in now.

A Particular Sort of Pain

It takes an effort to be brave. Sometimes I am not brave. Sometimes I am too scared by life to do anything. I hide. I waste my precious hours trying to forget what scares me, trying to blot out the reality of my life. I flop in front of the tv and escape into a fantasy world of soaps and zero stress. I feel guilty when I emerge at bedtime because I haven't enjoyed myself and I haven't done anything I wanted to do and I haven't built a path out of my fear. I land up loathing myself for my weakness.

I go up to my delightful, beautiful tiny cluttered bedroom with its art books, its knick knack mementos of people and places, Grandpa's music cabinet where my scores are kept, my pink satin ballet shoes, my treasures from my journey around the globe - a mozzie net, a water pot and a wooden African chair. My United Nations tee-shirt hangs next to Mozart and Van Gogh, my icons remind me of another way of being, the plants and the lamps soothe, the rug on the floor dances warmth into me, my ted is there on the bed to comfort me. This is me, this is me. This self.

What comes over me that I cannot keep powering forwards being me? Who is this horrible self? This despicable horrible me who's turned to fat, apathy and self-pity? Is this adolescence? Yuck, no I don't think so, it's worse than it used to be but it's not a new feeling. I feel as if my confidence just erodes a little bit every day, my sadness grows till I am consumed by weepiness. My childish dreams won't turn into exciting realities however hard I try. What dreams? What dreams are shattered such that I weep? What sadness overwhelms me? And why does it leave me so scared?

The young me set forth with a skip. I feel skipping is central to my personality, a natural gait, a tendency to be brash not sensitive, a cheerful sunnyness, a zest for life, a bag of energy, a gamboling foal. A gait suggestive of naivity, idealism and rather old-fashioned not a trendy way of being, an outdoor sort of pace, impatient with constraint. There's nothing to stop a skipping child from being considerate of other users of the path even as they seem wrapped up in their own world. People smile at the child as she skips by. People smiled at me and I was happy.

It was a long time ago. I lived then in a world of certainty. I was disabled. I was certain of that. I couldn't walk, talk or use my hands by myself. I knew it was permanent. I knew therapy exacerbated my problems rather than alleviated them. I had a different sort of disability. That too was certain. Consultants and other professionals would take one look at me and declare it to be the case. Noone knew how to cope with me. That was certain too. It was a question of inventing and improvising as one went along. I was in a world of one.

It upset me that I couldn't actually skip, couldn't kick up those wonderful rustling leaves, couldn't hop and skip about the house doing chores - for some reason I longed to make custard, all that wonderful mixing and stirring and pouring. I was helped to make custard but it wasn't the same. It wasn't me doing something for someone else. It was the someone else still being there, considering me, on duty not relaxed. I wanted to make my mum a bowl of bananas and custard. I wanted her to smile at me as I brought it to the table. I wanted her to say "thank you darling". Was this a first crack in the happy child's being? No, this was a normal sort of frustration. I've cried so many tears because I can't draw, because I can't play piano and cello, but they're just normal tears because of my situation. They're the rage that's part of being me.

The problem with my horrible self, the one I am now, the scared one hiding from reality is that it's somehow not me. It's like something's got in and taken hold and grown till I am ill and misshapen with it. It needs a cure. It needs to be stamped out, eliminated. I need rid of it. It is not me. It is a blind alley. I've taken the wrong turn somewhere. I've lost my way. I have to unravel something and confront my fear.

Long ago I dreamed dreams of growing up. I dreamed dreams of making exciting new friends. I dreamed of a career. I dreamed of leaving home. It never occurred to me that I might lead out my life in my parents' house, stuck with them as they grow old. I always knew it would be challenging to grow myself into independence. Naive fool that I was, I thought the statutory agencies would help. I thought that with a personality like mine, with a talent like mine, they'd support my ambition. I thought I'd romp off to university, I thought I'd have a gang of pals, I thought I might find a loving partner, I thought I'd find groups to join and like-minded souls. I thought I'd find a niche and one thing would follow another and I'd go a long way. I'd have my own home, with my own things around me, employ my own staff to care for me, and most days I'd see my mum. She'd maybe pop in to take the dog a walk - a golden retriever, very well behaved - and stay to tea. She'd check everything was OK. It would be a comfortable friendship. But largely irrelevant. My brother off being a burgeoning architect somewhere with a globalised firm would jet in from Chicago or Melbourne or Hong Kong to stay for a few days and laugh at my quaint ways - a sis still stuck in a provincial backwater not far from home, writing music. Eventually he'd marry and I'd be terrified I wouldn't like her but she'd be bubbly and easy to get on with and I'd love their kids to bits and give them cranky presents that would make my brother smile and reminisce about our childhood together. He'd say I was like my mum after all, filling the house with seashells and photographs and always yearning for fresh air.

So went the fantasy future I strove towards. It wasn't secret, it was shared with anyone who'd listen. For money, I'd start a business - my two favourites were non-disability related. One was a seaside hotel in Whitstable a quaint small town 5 miles from home, where I could live in the hotel penthouse and enjoy room service and a piano bar in the evenings, where I could easily put up friends, expect the cleaning done, but with a manager running things day to day, there'd be time enough to write music. London was but a train ride away, Whitstable a level amble to the shops, the views stunning out the windows of a wide sweep of estuary and sky. Herring gulls would yell on the chimney pots beside me, geraniums and jasmine would twine around the sunny back wall. It would be a splendid place for breaks from the city and attract a very nice class of clientele, people who liked to stroll on the beach, enjoy the live music, the clean white linen in the dining room, the log fire in the sitting room.

The alternative was an inland farm in a quiet valley in the Kentish Downs, rolling green hills that are forever England. There to have horses running free, their tails cropped for cello bow hair, competing with the best imported from the former Soviet Union, an uncertain supply with the changed circumstances there. There'd be a small factory workshop where cello bows would be built by craftsman who appreciated the idyllic surroundings to work in. Professional string players will often pay more for their bow than for their instrument. It's an excitingly specialised world. I'd have clients wanting my cello bows, noone else's. I'd acquire a reputation far and wide. And on selected days I'd open up the farm to visitors, allow school kids to see what we did. The rambling old buildings would be sufficiently extensive for me to have a fitness pool in the barn, staff accommodation and a quiet place with beautiful views for me to work in at my compositions.

My world was full of music. My horizons limited to music. I'd already taken a deliberate decision to turn from my love of science and languages, to accept I could not be a polymath. I was however a bit hazy about where the capital might come from to inject into a new business. That would get sorted and become clearer as I grew up and learned more about how to set up and run a business. I didn't feel I ignored my disability. I felt I took it into account in making my plans and that my plans were reasonable plans for a super-bright child.

I'm sure we all do it as children don't we? We dream of being the mega pop star or film star, the millionaire businessman, the footballer on the winning team in the world cup scoring a hat-trick like Geoff Hurst. We dream our foolish dreams of success. I watched my brother going through these stages. I thought he was childish and I was more mature and utterly realistic. I'd trained people to look after me before. I'd spent a year in school with no mother there and not choked to death or died and I'd been able to convey my intellect even within the constraints imposed by a school schedule. I'd trained several people in my communication methods. There was no need to think of a future with my mother at my side. No need at all. So she wasn't put there in my dreams. She was left behind at home. My music was taken seriously and resourced by the authorities: I was being supported towards my dreams, being helped to develop my talent. It appeared on neatly printed scores with dotted i's and crossed t's, as it were. It seemed quite a safe dream to dream. I dreamed it in spite of not fitting in at school. In spite, or because of, being lonely. But I wasn't scared of being alone.

But it's a well known cliche isn't it that life gets more complicated. And as my frustrations with the authorities grew my disability turned nastier. I developed epilepsy (and would fit for half an hour most days) and with it the nasty fear that I might get worse. Epileptics sometimes die. I might die, prematurely before I got to my dream. I became a little bit scared of my disability. What else might happen to me? Noone could say.

The quiet floppy child became more and more disarrayed. The tremoring increased. Limbs just got longer and stronger making control of my retained infantile reflexes more and more difficult for carer, for me. I acquired a violent shaking of my head. I let out screams and shrieks when I didn't want to, my limbs flailed restlessly. My fingers got trapped in anything and everything. My feet got trapped and my ankles sprained. I couldn't straighten my legs any longer and was supplied with splints to be worn daily. At night I slept on my back in a lotus position spontaneously and apparently voluntarily got into but one I couldn't myself get out of.

I started wearing nappies so I didn't have to think of my bladder all the time. I started having problems doing my poos and could no longer do it in a sitting position. Sometimes my right arm would stick out wildly and stiffly and did not want to bend so that I could communicate. Sometimes my eyes would seize up and would not move. Often I could not open my mouth to drink. I hyperventilated for no apparent reason and with no apparent ill-effect for an hour at a time. I had days of hiccups. I fell asleep inopportunely and against my will. I found it increasingly difficult to sit unaided. I wanted just as much contact time as a baby, my limbs quieting when I felt empowered and not frustrated, when I was in touch with my enabler. I stuck my toes in my mouth, I chewed my hands till they were sore. I acquired insatiable thirst, I got inexplicable fevers. Both had to be fruitlessly investigated.

I compulsively blow raspberries for protracted periods of time. I thrash and lunge my whole self forwards and backwards in my chair. I giggle at the slightest sound. I pick at things with my fingers unable to stop fiddling with my seatbelt or my skirt. I tug my hair and stick my fingers in my ears. I eat paper. Sometimes I forget how to close my mouth and I dribble. Mostly my muscles are tight and active. I grind my teeth very loudly and to the irritation of a lot of people. Sometimes I hold my breath, sometimes my legs dither and jitter, sometimes I go white as a sheet and my eyes glaze over, sometimes I gasp in terror at the reality of too much imagination, the internal realer than the external (is this a dagger), sometimes I throw up unexpectedly and dramatically without being ill, sometimes my nose starts bleeding gushy red blood.

My hole in the heart failed to close up spontaneously, a toe on each foot became almost overnight seriously deformed in a curious way, I became more and more jumpy at noises and vibrations (I rarely complained of pain except from vibrations), my left arm didn't want to rotate and straighten sometimes. These are the changes in me between three and thirteen. These became the new realities I now live with, though I have left the worst and the newest two till last.

Last year I developed hysties (my name). I get to a stage of some fragility in my resilience and coping, a physical sensation of hovering on a brink, of being over-tense. It's not necessarily related to circumstances any more than my other excessive movements are. The trigger seems to be external but curiously insignificant in the big scheme of things. It's most embarrassing when it's triggered by a person's presence. I've met 3 persons who do this to my body as if they're giving off some vibe that just clashes with my own and it's nothing to do with how nice they are and what they are saying. It's something else. A more normal trigger is a slight unexpected noise like the cutlery rattling in the drawer, a chair being pushed back quickly and squeaking on the floor, a person fiddling with a couple of cassette cases as they speak. In other words the sorts of things one can't eliminate from life if one is trying to lead a quasi-normal mainstream existence.

What happens? I giggle in a reflex-driven way and I then cannot stop. It becomes half-giggle, half-sob and involves the whole of my body and a great deal of noise. I can't hear anything for the noise I am making, the awful, awful noise. It's outrageously intrusive for anyone around me. It makes me feel entirely unacceptable. It makes me look entirely un-human. It goes on and on till I am sweating and exhausted and it still persists. No intervention seems to reach me.

People suggest I should be whacked across the face. My mother once in desperation flicked a sheet of A4 paper across my face which could scarce be said to be a whack. I stopped. I hated her. I wanted to be loved and comforted: I felt despised. I started again shortly afterwards. It didn't take away that brink feeling of fragility and so the first sound I heard, off I went again. What works best is an enveloping hug, as much of me in contact as possible with a caring loving person, and as quickly as possible before the hystie can take hold. My mother also does a reward and relaxation technique that sometimes helps to talk me down, to break the pattern, first to a count of 2 then to a count of 5, eventually to 20 and at 60 to be distractible into something else.

Most of the time these small noises - the top of a pepsi bottle being unscrewed, someone sneezing, an envelope being opened - just stir one small reaction in me, a jump, a gasp or a giggle, a reflection of my hypersensitivity to sound and touch. Why occasionally must it be so much worse? Don't I have enough to deal with? Where do these episodes come from? Thankfully I don't have many of them but there's a fear to fight too of acceptability. When I was in New York last year I was having such a horrible spate of hysties I was afraid of going out and ate in every night when I was tired instead of risking being stuck in a restaurant unable to shut up my horribly voluble noises. You have no idea what it is like to be a composer who hears beautiful music in my head, music that has been performed publicly by professional musicians and yet on the odd occasion when I make a real actual noise it is terrifyingly un-human...

The second new and awful development happened just a month before Christmas when I woke with a wrist gone tight. It could be relaxed but it kept going tight, another of these spontaneous episodes that grip my body and require hands-on help to rescue me back to comfort. Splinting made it worse. It was very very uncomfortable and made me want to scream. Maybe that's what some people would call pain. To me it wasn't sharp enough to be called pain but it occupied the whole of my mind. The tightness meant I could not move my arm and hand to communicate except in a minimal yes/no sort of way. I was freaked out with panic. Communication is everything to me, a habit and something I've taken for granted as speedy and efficient for 9 years nearly. Any interruption in my ability to "speak" is intolerable. It's bad enough that I can only speak when I have a trained carer at my side. It's completely unacceptable to have a body that seizes up in that quarter. I don't give a damn if you lose your voices when you get colds and sore throats. It's not the same thing. You know what the problem is and you know it's temporary. To wake up with an unexpected, devastating problem that won't go away was almost more than I could bear. My consultant saw me very promptly as an emergency and put me on a low-dose anti-epileptic to release the tension. I slept my way through the Christmas period and the millennium in a sad miserable bundle of unrecognisable me. Thereafter, my mum stopped the medication. The episode was past, driven out by time or pharmaceuticals. There has been no recurrence, but there quite possibly will be. My disability is cruel. It is not just that I cannot do things like walking and talking. It is all the things that happen to me in these bursts of what one can only describe as neurological disorder that burden me. When my consultant describes me as having a neurological disorder it's very literally true.

So my disability's got decidedly nastier, it's decidedly more complicated to look after me. It burdens me more. It raises all these frightful questions of acceptable behaviour. Whilst I was quiet and floppy, people smiled on me. I was a beautiful child. I may still be beautiful in spite of being fatter but I'm now rather more obviously peculiar and unpredictable. I think this is the "ordinary" tough bit about being an adolescent: I wanted to be as near normal as possible, I wanted it to be possible to overlook my disability, I wanted people to look past it and relate to me. I thought this would get easier as I got older and my precocious intellect grew more into line with those around me, and it hasn't damn well happened. My disability dominates to a greater extent than I could have believed possible at 5 or 6. People no longer smile as I skip by.

But I'm not skipping much now and all this developing complexity is not the reason why I'm not skipping. I'm quite bloody-minded enough to find ways past and through all that, to brave it out, even to pretend I don't mind when I do, very very much. I want to be loveable and I don't feel I am. I want to have friends who are both able-bodied and disabled. I want almost exactly what I wanted 7 years or so ago. I want my independence. I said the authorities grew more frustrating. I said I thought I was a naive fool for thinking they would help me to grow towards my dreams. The fear I can scarce face, the fear that I run from is fear grown because of their behaviour. I am scared of my dependence upon my beloved mother. I am so so scared of what will become of me should something happen to her. I can't see how to be independent of her any longer. I can't see how I can live without her. The independence I have been striving for is not merely not on the horizon, it is lost sight of. I'm a foolish, clingy, unbrave person who is afraid of being hurt, specifically by being wrenched from her.

I have become dependent on my mother all the time for everything. She knows how to deal with all my care needs. Noone else does. Noone else does because noone else bothers to learn. She is trapped in the relationship through her love for me. Love makes the world go round. In my dreams I was surrounded by people who chose to be with me, who were my friends, who were my colleagues through performing my music or who were part of my working life where I had control, where I hired and fired. The team of enablers who helped me cope with my disability and empowered my quasi-normal life were personally selected by me and in my mind were dedicated friends who loved and understood me although it was their job. The paid companion of yesteryear. The Annie Sullivan figure. The world was not a horrible evil place where people got ripped off and the disabled were neglected or abused. Everyone was basically nice.

My fear now is of the world. I am a cynic, my optimism choked off even as I try to rescue it as a lifeline. I've had too many encounters with too many people who do not share my values and who do not nurture my needs, heed professional advice on how to avoid harming me. I feel damaged by my encounters with authority, too damaged and hurt to allow them close to me again. I want to do a Rip Van Winkle until a solution is found and I can escape dependence upon them. I know there are loads of wonderful people in the world. I get e-mails from them, I meet them. I know there are plenty of people I can't be bothered with or actively dislike and on the whole one avoids them, ignores them or is distantly polite with them. That's the same with everyone. That's mainstream existence, that I can handle. I can handle the disappointment of rejection, I can cope with everyday scepticism, I can extend myself out and meet people in the world of the arts, in the field of disability activism, I can break new ground and make demands for inclusion even though all this is tough, as long as I have support. And I have always had support. People who work closely with me do understand and support me, will explain and be my advocate, ensuring that I am taken seriously. But the people who hold the purse strings and take decisions work to their own rules when it comes to my case. That's what frightens me.

Even the law of the land does not apply to me. The law states that all children with special needs must have those needs met. Those with a complex or profound disability have their needs identified through a formal multi-agency assessment which leads to a contract being drawn up (a Statement of Special Educational Needs) stating what the child's needs are (each and every one of them) and identifying how the local education authority (and perhaps the other agencies - health and social services) are going to meet each and every one of those identified needs. The provision should be quantified and specific, eg what qualifications an assistant should have, how many hours they should work. Monitoring and evaluation processes are part of it and should again be specified. The contract is legally binding on the LEA and its contents can be contested in an SEN Tribunal if parents don't like it, ie if they think it does not adequately describe little Johnny's needs or the provision is in some way inadequate or inappropriate. The Statement is based upon the appended advice to the authority and it has in law to be reviewed annually through a formal process which has its own timeframe and meetings and reports and so on.

The LEA started the process of assessing me when I was three years old. I was nearly 10 before my Statement was drawn up, agreed and issued. It was not reviewed for 3 years and the only decision at Review was to reassess. I have therefore been assessed by my local education authority for, now, 10 years of my life but my SEN have been met for only one of those years. I have been paid compensation for 4 years of injustice when I received no education or care support. The derisory sum of £2,000 could scarcely be said to be punitive. It's obviously a lot cheaper for the authorities to flout the law than comply with it. But then they were told they didn't have to comply even. A second complaint that they were still not providing according to the law led to an un-appealable decision against us, notwithstanding the LEA refusing to implement my Statement, notwithstanding them refusing to heed the professional advice they had sought, notwithstanding their decision-making was based on no advice that could support it and that the LEA admitted that they had no evidence to support their decision-making, notwithstanding the fact that the Statement was not reviewed as the law requires to see what progress I had made and to adjust targets and provisions to suit changed circumstances, notwithstanding all of this and that I was without education and care support, it was the view of the Ombudsman that there was no maladministration by the people responsible for making and paying for the non-existent provision, and that no injustice had been done to me. In other words I am beyond the law. We have sought at various points the advice of a specialist lawyer of national reputation who has each time said that we cannot even go for a Judicial Review in the High Court because the LEA is always promising things around the corner and we would therefore not even get past the hurdle of securing legal aid for a case to be brought. The state is not my side. The state is happy not to provide for me. Nothing can persuade me otherwise. My formative years have gone by growing bitterness into solid form. Who am I that they need not enact the law when it comes to me? I am flesh blood and human. I have normal chromosomes, a normal brain scan, normal nerve and muscle function. Noone's ever found anything the matter with me, although something obviously is.

I have now been seven and a half years without provision. At a time when my contemporaries are dropping subjects to specialise for exams I have yet to be taught any English, science, maths, French, German, history, geography, PSD, RE, C/DT et al. I am not a part of anything. I am kept separate and isolated. I am left in my mother's hands. Before I explain the size of the fear I am having difficulty confronting, I must describe a few little incidents because in all fairness the authorities have sometimes resourced me.

They sent me to school a year late. At 5 I went into a class who had been in school 3 terms. I'd been at playgroup with them but I wasn't allowed to start school with them. The bureaucracy wasn't sorted for that. I had to stay behind in playgroup. When I started, it was on a year's trial. There was no certainty about my being allowed to be there. I had to prove I was good enough to be among the able-bodied. I had to not be a burden upon the school too.

I was provided with a 1-1 assistant. I was soon labelled gifted. I did OK. They assessed me musically in a special assessment. They assessed the impact of my being at the school on the school in another assessment. They tried to help me to fit in. For a couple of terms I felt happy, included and taking it for granted. Then came the summer holidays. The music cavorted around in my head incessantly. My mind raced around numbers. When I returned to school nothing seemed to have changed with me: the class was still doing babyish things. I didn't fit in at all. There was no scope for the things I was doing, writing ballets, eg. I withdrew into my head, into my imagination and got lost there in my first clinical depression. I was referred to a psychologist because I wasn't "speaking" any longer and I was losing weight through not eating too. I was 6 years old. I wanted to be like the other children. I was aghast, broken and at a standstill because I was discovering greater difference than I could bear. The psychologist was not helpful. He would not talk to me even to say hello. He asked my parents why it was a problem for them that he ignored me. My heart shrivelled up at the callousness. I never saw him again.

My assistant left for another job. I had to remain at home all the time with my mother while the LEA sought a tutor, a new assistant and a grammar school willing to let me be a part of them. No grammar school wanted a 6 year old mute wheelchair user. Grammar schools were for the high-flying 20% of able-bodied 12-18 year olds. I visited them, saw how fine they were but they put barriers up when it came to including me.

After quite a lot of months, the LEA provided a man to help me get down the music in my head. I worked with him for 20 hours a week for 2 years. He stuffed all the notes I wrote into a DOS programme on a computer and the computer would not extract the parts. It printed the full score out neatly but the music in this form is not playable. This became more and more of a problem because I could not hear my music performed. I became more and more het up at writing music that wasn't being written down in playable form. I had a totally totally wonderful relationship with Colin. I was so young and naive I didn't know how special he was. I thought I'd find other people like him and I never have. I've never trusted anyone and felt more loved by anyone before or since. And yet he was professional. He never forgot why he was there. He never forgot my age or my disability. He related to me as the whole me. But eventually egged on by the RAM I said I couldn't write more music if he just stuffed it into the old DOS programme and it remained unplayable. He was taken off the job. I never saw him again, though we did exchange a bitter-sweet letter or two. He died a premature death two years ago. Noone bothered to tell me. I didn't get to go to his funeral. He'll never sit in the audience and hear the music played that he with such great patience note by careful note hour after hour took from my dictation. I live with his photo propped up in front of me, a reminder of what can be, and a reminder of what must not be lost when found, a reminder of youthful naivity.

In the summer of 1993, 5 months after my assistant resigned a new one was appointed. At the time I had to sit on my enabler/carer's lap in order to communicate, eat, drink and participate in any activity. I am right-handed. They decided to join together all the roles and have one person to be my Director of Studies, tutor and enabler. They selected a left-handed man and expected me to sit on his lap throughout the school day while he had sole and solitary charge of me. I found this distasteful and inappropriate and decidedly odd in an era when newspapers are full of cases of abuse perpetrated on vulnerable children by those in a position of responsibility for them. I did not feel I was being treated fairly and accorded the same respect as an able-bodied child. My feelings and fears were ignored. The man was not un-amiable or unintelligent. But he was a man and I couldn't learn to trust him. I learned to fear him when he gave me an essay to research, my very first essay. He wanted me to research concentration camps and the holocaust. I was 6 years old. I didn't want to know about those horrific things. I didn't understand why that was the first and most important thing for me to learn: the killing of disabled children by the state. He was too much a teacher to discuss it with me. After marking my essay, he moved on to Saturn's moons and wanted me to learn to play chess. None of it seemed to be preparing me for entry into my grammar school that I thought was around the corner. I ran away in fear and buried myself further in my music.

The images don't disappear. The fear doesn't dissipate. I became afraid of who I am because I became afraid of what people might do to me. I lost too much naivity in one fell swoop. I wasn't sure I understood what the LEA were trying to achieve, I didn't like being different from other children, I couldn't hide my distinctness and fit in, I became afraid of who might look after me, I became afraid of what society does to the disabled. I became less miserable because I was feeling more fulfilled but I wasn't agitating to get away from my mum, even though this was the spell in my life when I really quite heartily disliked her. I resented the fact she knew nothing about music. I resented the fact she couldn't speak foreign languages and knew absolutely nothing about maths. I hated the way she dressed. I hated her voice. I was hugely intolerant of her own needs even though I had only a couple of years earlier seen her succumb to pneumonia and crawl helplessly across the floor to get me to bed when dad was in the Gulf and war was imminent. I think my brother grew his fear from then because he had a sick mum and a helpless sis and was only 6 but I sailed through it, minding but not traumatised. It's not forgettable but it's not a nightmare memory. It doesn't re-visit me as I sit in the car hurtling along motorways like the images of the holocaust does when my own vulnerability lies exposed and raw. I wanted my mother to empower me every single moment and felt like screaming even if she went to the loo. She knew little about it. I kept it more or less to myself because deep down I loved her and appreciated what she did for me and I didn't like the feelings I felt. I called her the baglady quite openly and ignored her a great deal. I thought her awfully incompetent as time went by and no new assistant or tuition materialised. Why could she not make the LEA provide things? I complained to the ombudsman. I organised hydrotherapy for myself.

It took the ombudsman two and a half years to decide that I wasn't receiving care support and education and that this was unjust, two and a half years in which he sat and watched as nothing progressed and he no more than anyone else did anything about it. My file filled up with letters from me and my parents to the LEA. My anger grew. I always kept myself ready for being resourced. I made an action plan each term based on what the LEA had said at the last meeting would happen. After a while I'd revise my action plan and make a plan of what I wanted to do or hoped to achieve during the next few months, trying to press forward on my own singular path.

In the summer of 1994 my mother collapsed with exhaustion. I could no longer write my music. After a while Social Services supplied agency workers to come in and look after me. They hadn't any idea about empowering me. They took me to watch diggers, they stuffed me full of chocolate bars and ice cream, they wouldn't exercise me, they let me sit doing nothing. They didn't show me books or play me CDs. Astonishingly they didn't even sit me in front of the tv. I liked quiet times in the garden but I didn't like quiet times in the garden with them. One time one of them refused to pick me up off the floor and left me there while she went out to get my brother from school. Mum sat with me unable to move me, crying. Feeling helpless. One of them lied about my communication. She waggled my left hand around to show off her capacity to communicate with me to a visiting fruit-cake from Social Services. One terrible day I was left to fry in the sun. The helper sat in the shade with her sun specs on and watched me squirm. She put me in the middle of the lawn where there was no shade, she turned me towards the sun. Then she walked over to her shady chair and watched as I got overheated. It doesn't take long when you're in a plastic nappy sitting on a plastic chair. I cannot cry out in distress or thrash my limbs about to gesticulate. It is a defining characteristic of my "locked-in syndrome". I screamed and screamed but nothing came out. I sobbed, I raged, but it wasn't visible. Would she have done anything if it were? Was she enjoying watching me like this? In my imagination I leapt up and killed this "carer", this peculiar callous woman. Eventually, my mother saw out of the upstairs window that something was wrong and telephoned the agency. She came downstairs and sent the woman away. She dragged me out of my chair and into the shade where we sat for a lot of hours on the cool grass until someone came from Social Services to see if we were all right. I wouldn't let her touch me. I felt abused. She wasn't allowed to lift me anyway, so my brother had to when he came home from school. I couldn't even depend upon kindliness.

Before my mother had become ill she had asked for regular help from Social Services but they only provided services that removed me from my family and that was unacceptable to my parents (and to me). My mother had pointed out that this was not in accordance with the Children's Act which promotes the upbringing of disabled children by their families and makes mention of support such as domestic support and help to have a holiday. She was scoffed at. I can remember a social worker laughing at the idea that we should receive help. I was out of school and at home all day long. I needed attention at night as well. My mother was told that there were a lot of children with a lot worse disability than mine and the state couldn't be expected to provide any domestic help to us. After my mother became ill, they complained that the house was dirty. They still didn't provide any domestic help.

It never occurred to me that they might force their ideas upon us. My incompetent parents were in charge of me. I knew abused kids were re-homed away from their parents, I knew a lot of disabled kids went away to residential schools. Neither seemed to have anything to do with me and my life. I'd just been awarded a place at the Junior Department of the Royal College of Music in London and was going to start attending on Saturdays from the following September with able young musicians up to the age of 18. The LEA had sought the place and were funding it. The LEA had bought me GCSE textbooks on science and maths. The small scared ever so bright child that was me aged 7 thought that when mum was better on my life would go. That's more or less what happened but there was an emotional blip.

First a social worker had a horrid confrontation with mum in the garden in front of me and involving me. She said mum couldn't be trusted to choose my reading material. She said I wasn't to be allowed to read my LEA supplied books. She said she would select what I could read in spite of the fact we'd never ever met her before. She said she would decide how long each day I was going to be allowed to read for. I had never encountered an attitude like it, the open contempt for my mother, the open flaunting of authority, the open disregard for me and my feelings. Even schools with their antiquated authoritarian structures do not behave as this woman behaved. My individuality had no meaning to her. My humanity therefore was invisible. I was some sort of pawn in some sort of trip I didn't understand and didn't want to. I cannot control my emotional reactions. All books have felt dangerous since then, have felt not forbidden but too hot to handle. It was always difficult to read. Sometimes I'd look at a page and everything would leap into my mind that was set out upon it, sometimes I'd look at a page and see nothing that made sense. Always I could not scan methodically because of my motor difficulties (let alone hold a book or turn a page). Almost noone has helped me to read and it has become much harder as I've become older and less used to hand-eye coordination. It worked much better when I was little and did lots of writing and drawing on paper. Maybe it just helps my eyes to read if my hand is on the page but now I just tear and crumple the page in my chaos, now it just seems an effort not worth making. If you can't stand the heat, you get out of the kitchen. There were plenty more fishes to fish for, plenty more opportunities to keep busy. Self-expression is more important to me than reading. It's just that I hate the feeling, the hot fear that surrounds books. They did a secret psychiatric report on us that the ombudsman told us about and it concluded that we should be resourced in accordance with the advice to the authority and in line with the action plan that gave me a team of enablers, working both inside and outside school and weekday hours. That was 1994. Six years later, I'm still waiting.

There have been many promises, many meetings. The authority has received advice with great regularity about how to provide for me written by people with long and close knowledge of me and good professional qualifications, people whom the state pays to work with me. And yet I am not resourced. I cannot find the solid ground on which I can rely. I cannot build on my achievements. It still hurts too much to discuss the RAM, my beloved academy where I thought I had lifelong friends, another initiative funded by the LEA. The goodwill evaporated in the middle of a lesson there when my mother was frogmarched out and things were thrust into my face for me to "read. read anything." The page was about 4 inches from my nose. My wits flew out and ran down the street. I don't think they came home to my body for a year. My home from home did not accept me! After a year in which I was allowed to attend classes with undergrads and postgrads, use the library, mooch around the canteen with pals from my classes, camp at a midsummer festival in my tutor's back garden in a little flock of tents, have an ID card, have ramps made for me, be given first refusal on the overnight flat in central London where professors could stay for a mere £7, where students performed my work and included me, where I was reported to be up to undergraduate standard at this centre of excellence though only a miniscule 8 years old, where other teachers talked to me, showed me stuff like Cage's piece for a prepared piano in a private rehearsal, where postgrads were choosing to rehearse my music to play at their final performance concert instead of the more conventional Bach or Stravinsky, where my tutor said that my interpretation of Mussorgsky's Pictures at an Exhibition was so revelatory I should publish a book on the subject, where I sat in seminars in my leg splints on the floor learning how to organise my life, build a career, where I was quite a go-getting little brash kid unafraid to leap in to debates and encouraged to do so, where I felt included and amongst my peers for the first and only time in my life, where I danced dreams of a lifetime association and felt safe for a while, this place turned Brutus.

They questioned my integrity out of the blue in the middle of a lesson on score-reading and without admitting that was their intention, without consulting parents or LEA about their doubts and without admitting them ever. Even now they tell my psychologist they never doubted my ability. They did. They sneered at me. They rejected me and cast me aside, they told me not to come back. They did it all most unkindly and in the middle of a lesson. They sneered at my mother. My world fell apart. My mother cried and screamed her protest. I was inaccessible, terrorised by the betrayal. I have not learned how to trust again. I have not learned how to laugh again. I am said to be quiet where once I was boisterous. My friends turned out to be fair-weather friends. I lost everything. The LEA wrote letters to the RAM that weren't answered. I couldn't stop crying. I didn't fit in. They didn't want me. That was more than I could cope with. The manner of it being conveyed to me, the sneering tones of the head of department, the brutality of their turncoat behaviour was way beyond what I could assimilate. The denial of my individuality, the denial of compassion, the denial of honesty, the conspiracy that set up that day. Take the wind out of my sails, why don't you, take my breath away, break my heart, promise me every week for 52 weeks that I am wanted and accepted, that I do not have hurdles and am being nurtured that I may blossom "all you have to do is grow" and steal it away in a moment, render it worthless.

I spent a year awash in an unknown place a different sort of place from my lost depressions. I was not alone and lost, I was crowded, hemmed in by baying hounds, batty foxes and foxy bats, alician critters that transmogrified into jeering human faces, silverback males with their dominant nonchalance scratching their arses, vultures sailing down to gobble flesh, the mermaid Jane of my first ballet metamorphosed into a handless pianist, the internal music never-ending in its wail, the choral accompaniment too loud and strident to bear, the clashing chords of disharmony and chaos resolving into sleep perchance to dream. Elision, conflation, derision. The ground swallowed me whole suffocating me, sand stuffed in every orifice. Rip Van Winkle danced like Fagin, benign portrayals of vile wickedness. The ostrich child spluttered but would not die. Small chickens clucked. There was a great deal of cackling and hissing. Beautiful swans spat at me. The music formed into an operatic ballet, a funeral pyre burned, it had nothing of subtlety about it, raucous, cacophonic, polyrhythms and multiphonics, bagpipes and African drums, mandarins, marmosets, illogicality and weirdness, a feast of surreality, a drenching in extreme emotion that there was nobody to help me out of. Everything was orange, al the time everything was orange. I glowed in the dark, I was sure I glowed in the dark. I couldn't hide anywhere from the baying hounds with the pudgy human faces. The child was not at home. The child had gone awol. There could be wrestling with the images and the feelings and it wasn't normal: I wasn't within or external to the view, I was helterskeltering lurching and swinging in ceaseless motion from inside sweaty gasping fear to far distant physical shrivelling. My flesh crawled and shrank constricting a nut hard me into a pea-sized person. There was no BFG here, the giants wore white coats. My spirit remained huge, it sailed the world like a cloud unattached, devoid of feeling, passive. Sometimes I was inside out. I had a hard core and no bones and I could see my vital organs. I could see my heart beating and I could watch as it was stabbed. I could see my brain picked over as if being filleted for someone's fish supper, I could hear low voices discussing me. There was no peace no quiet, an ocean relentlessly pounding me, a corpse in the sand not waving but drowning, a lame duck that wanted to fly like a herring gull, scream like a herring gull, throwing head back and yelling, soaring on the last streams of daytime sun far above the rabble, clacking with the jackdaws, sturdier always sturdier than the fragile martins of old, resident, not going anywhere, not going anywhere, braving out the cold storms, not going gentle into the good night, not dissipating crimson into death but burgeoning burnished gold from the flotsam of shipwrecked self. This bird dream grew into a harbour where I could hide safe while the traffic roared by me. Lorry after lorry, train after train, cattle truck after cattle truck bleaker and bleaker greyer and greyer : Dorothea Lange's faces strung across an endless prairie tossed in white flour that poisons slowly but looks pretty as a dusting of snow on a Christmas card. Candles flicker. Knives glint. A vast squid the colour of fat pink earthworms stings my bruised face and threatens to spread repulsive tentacles round my thrashing limbs. A hoard of locusts block off the light which was only a single bare lightbulb anyway and the earth is hot and damp. There is nothing safe, nothing beautiful, nothing that seems to be what it appears. There is no certainty and no way out. This is my future and this is my present. The whole world has disintegrated into nightmare. My mind spins relentless tortured uncontrollable visions for want of a better word, daytime nightmares that distract me into a quiet non-action. I am disturbed. I am distressed. It occurs to me that I am mad, but detached observation of this sort does not stop the damaged child from bleeding on in freestyle.

The Health service referred me to a centre of excellence for psychotherapy. They said I was traumatised. They said I'd had a bewildering range of experiences of acceptance and non-acceptance culminating in my rejection by trusted tutors after a year.... It meant a journey up to London and past the Academy once a fortnight. To rub the salt further in they wanted to separate me from my means of normal communication. They wanted me to sit in a room by myself and be experimented upon. They wanted to outnumber me. They wanted to listen to my music but they were deaf (hearing incapacitated) and couldn't. They could not grasp how tired of sitting in my wheelchair I got after a journey there of two and a half hours. They could not see a child. How could they see a crying child? I was a non-person reinforced. My disability cast me beyond humanity. It meant I was not treated as other children. Not even when my health authority asked a centre of excellence to help me acquire "emotional strategies to deal with my unique personality, disability and gifts". I could be poked prodded discussed assessed. It seemed to give strangers rights over me, strangers who thought nothing but that their power was right. Take a human being you have never seen, take that human being the likes of whom you have never seen, decide her fate in twenty minutes. Do not involve her, do not involve those that know her, do not pass go but do not forget to collect your salary. There are rich pickings for professionals but these strangers do not relate to me as a person. They have a different voice when they speak to me. They don't speak matter-of-factly. They don't try to help me. They don't explain me to me. They don't try to make my life easier. They don't have advice on how to manage my disability. They don't share, they're not partners. They are another species. I want nothing further to do with them.

My mother knew I wanted company. I wanted to share my experiences with other disabled people. She persuaded the LEA to get me internet facilities. It took a long time before it actually arrived (by which I mean 9 months) but they provided me with training as well as the modem etc. I reached out and found people to talk to, I hit on the idea of my webzine FROM THE WINDOW and got that sorted to happen. Real life after a year of crying leapt back into perspective. There were again things I wanted to do. I couldn't bear to think about music but here was something to be getting on with that was fun. The LEA printed out hardcopies of my first edition, one for me and one for my patron John Tavener. They helped to organise it being published on the net because I hadn't got the software. The LEA seemed to be on my side in life even though they didn't resource me in sensible ways - didn't provide tuition, didn't provide enablers. They had tried to push through a statement that was quirky and unrelated to advice but when we went to tribunal they drew up a good one to avoid the court. That is the statement I still have. My mother whom I clung to rebuilt me as best she could. She pointed out that my achievements could not be undone. I returned again and again to my beloved Hebridean island to bathe in the harmonies there and soothe my sorrows away in the songful breezes by the ocean's edge.

My mother became exhausted again. The LEA would not help us get help from the SS. There was a nice domestic helper by now. She came in for 3 hours a day five days a week. But she wasn't allowed to help in my care. Mum had to do that all by herself. When she became too ill to manage the helper still wouldn't help. It was not her job to help either an ill mother or a helpless crip child. She carried on dusting. My brother was off school 3 weeks despite protests from the education welfare officers before the SS changed the helper's role and allowed her to give "personal care" to me. Any goodwill seeping back into me eroded rapidly. The authorities were not working to help me. They were quite satisfied with pigeonholes that divided me into a multitude of budgets rather than a whole human child within a loving family overburdened with my extra-ordinariness that the state was supposed to support them with.

(The state is even more peculiar then even you might think having read thus far. When I was smaller they refused to pay benefits to me that are due to a disabled child. They decided that at night-time I was less at risk of harm and less in need of attention than a normal able-bodied child. They decided that despite my MP, consultant etc etc etc writing to point out that I needed to be turned at night, that I couldn't call out for assistance and yet was frequently sick and had violent nosebleeds, that I got chilled and couldn't pull the covers around me if I kicked them off, that I didn't need any attention during 12 hours of the day over and above what was accorded to a normal vocal and mobile child. It took a very long number of months to get them to review the case and twice upon review they decided their original view was correct: I was not eligible for benefits. Doctors conduct the review, not administrators. My mother refused to accept the adjudication. She wrote letter after letter. Social Services wrote a letter saying that in a residential situation I'd need waking staff checking me every twenty minutes or so. My senior registrar wrote to say that in nineteen years of paediatric work specialising with children with developmental delay I was one of the most seriously disabled children she'd ever seen. My consultant pointed out I was in danger of choking because I was prone to reflux (which is what made me sick so often) because I couldn't sit up or call out and I had to be closely supervised all night. They still turned me down for benefits routinely paid eg to a child with Down's syndrome. My mother wrote a very fiery letter to the head of the service demanding to know what he'd feel if his own child were thus treated. Amazingly they again reviewed the case, granted me lifelong highest level benefits and 3 years of backdated payments.)

My mother grew stronger again after about 3 months. Through my new LEA keyworker's introductions, I was offered an exhibition space for my placetics - large room-sized installations that had occupied my mind and awaited opportunity to build them. On the strength of a person's word, the LEA sought me an art tutor part of whose job description was to help me actualise this exhibition. For the first time the LEA followed through with their own plan and four and a half years after leaving my infants' school, I got a tutor. He's still in post. The exhibition didn't happen. The definite promise turned to downright refusal to countenance it. I bled from re-opened scars. They couldn't be persuaded to change their tune. I was as unacceptable as ever, forever outside, beyond rules, in a world where things are negotiated on an individual level and there's no seeming right to anything, in spite of disability, in spite of talent. No grammar school, no music college, no art exhibition.

This was the time when I received my apology and compensation for 4 years of injustice and the promise that things would be sorted out now that I explained about earlier. 3 weeks later they decided not to enact my Statement of SEN. When my computer broke down they refused to replace it ever and they never have. The LEA manager who had ineptly floundered from unorthodox provision to unorthodox provision without ever sorting the key issues and ensuring solidity and continuity took early retirement and was gone. New brooms swept in with a reign of terror. They proposed to amend my statement and proposed to send me to a residential special school hundreds of miles away for children whose max age was 15. At 6 they wanted to put me in with 12 and 13 year olds of high intellectual ability. At 8 they resourced me to study with 18 to 23 year olds of exceptional ability. At 11 I was to be with the mentally incapacitated. What had changed? Upon ewhat sort of advice coyuld they base this u-turn?

I would have no one-to-one assistant. I would not be allowed home even at weekends. There were two classes at the school. One was the exam stream and one was for those with mental impairments. The Head told my mother I would have to attend the latter as I had not been following the National Curriculum and would not fit into the exam stream. He also said that he would not normally take a child whose parents were opposed to the placement. My consultant advised my parents not to tell me because I would be emotionally damaged and he wrote to the LEA to protest at the unsuitability of their proposal. He said it risked causing profound emotional damage to me. The LEA ploughed on regardless.

Legal processes ground along too. It was September when I received my compensation. It was July before my parents could present their submissions against the proposal. Another school year gone by, and a year when I crossed a line of no return. I found out about the proposal. I found out that there was a definite determination on the part of the authorities to disregard all, and I mean all, the professional advice to them regarding my educational, social, emotional, technological and physical needs, a determination to disregard advice and to hurt me. I don't care if this sounds paranoid. How else can you construe it?

They admitted they had no advice to support their proposal. On the contrary besides what my consultant had said about serious emotional damage, my OT told them it would be dangerous for me to be looked after by those trained in other disabilities as they were likely to make wrong assumptions and not appreciate my very particular vulnerabilities: it would take any one person a very long time to learn the individual characteristics of my singular disability and during that time I would be physically at risk.

The LEA ploughed on with their neat bureaucratic decision to get me off their desk, out of their hair and into another county. I had been led up a garden path by promises of enablers and mainstream life for 5 years or more, promises that hadn't materialised and had left me dependent upon my mother. Now they wanted to wrench me away for their own convenience. My parents submitted their representations against the proposal. The LEA withdrew their proposal when we produced a fat file of evidence to support NOT sending me away. It included letters from all manner of well qualified people who know me either professionally or socially. I felt surrounded by my supporters and full of spunky fight.

Spunky maybe, but inside was a great cold hulk that had shipped itself inside me and frozen my optimism forever into a fear that paralyses. They wanted to forcibly take me from my home and incarcerate me in a building with no means of communicating pain, no means of preventing damage to my self. They wanted to surround me with the physically sensorily and mentally incapacitated and call it educating me. They even had the nerve to say that my parents were ignoring my spiritual development, my parents who took me to the windswept shores of Iona, the quiet hilltop of Ronchamps, the golden gloom of St Marks, the cathedrals of Lincoln, Canterbury, Notre Dame and who encourage my connection to the orthodox church which is my chosen home. My spirit dances in harmony with a thousand others and needs no statutory agency of the government to help it along. I have Sir John Tavener as my godfather.

So here chill fear lies, a cramping inside me that chokes off my breath if I should pause to look at it. I cannot believe the authorities mean me well. I believe they are vicious and deliberately so. I cannot cooperate. I crumble into stiffness and sit immobile. I am no longer eager to be helped towards my dreams. I cannot trust these people who are decision-makers in my life. I know they will hurt me, again and again and again. The LEA decided they didn't have enough information about me and would conduct a re-assessment of my needs. They were advised that this would harm me, that they had been collecting information for 8 years and had plenty of advice on what my needs were. There would be no new advice my psychologist said. Naive fool: you have to take account of the fact they will make it up.

The LEA's reassessment took 18 months. During that time I had to travel one day 120 miles to a national centre of excellence in augmentative communication in Oxford. My team came too and two people from the LEA who didn't know me, although I'd met one of them when I was 4. They put me in a room with mum and the head of the centre and filmed everything I did. Everyone else watched on the tv screen. I sat frozen all morning apart from drinking several pints of milk. I lunched with my psychologist, my mum, my dad and my brother. My tutor was there and my OT. The LEA paid for everyone to be there. Same procedure in the afternoon, except that I answered two yes/no questions in my habitual way.

The report from this national centre of excellence said that noone had ever learnt to communicate with me as my mother does. They asserted this in spite of being advised to the contrary by the OT. They said that noone ever would learn it. They asserted this in spite of not having seen it for themselves. They asserted that anyone could learn to communicate with me if I changed my habitual means of communication. They asserted that I had use of my left arm because they had seen it. They recommended I learn to use a system of communication with my left hand. Four members of staff signed this report, including the Director of the Centre, who had herself conducted the assessment. Now the LEA had what they wanted: a nice cheap option. Any old bloggs could communicate with me although it would be slow and would not allow me to say what I was thinking. It did not require that anyone trained to meet my needs. I should be the one who trains myself in a strange chequer board of letters that I had to remember the sequence of in order to answer the communication assistant's question with my o so wonderful left arm.

Now I wonder if you can guess what my o so delightful supportive LEA did. It issued a new draft statement of SEN stating that I had use of my left hand. They had been advised for 10 years by people who knew me, by people who worked hands-on with me that I could not develop an independent means of communication and this was related to the unique nature of my disability. This advice is worth nothing to the LEA. They have a centre of excellence telling them I can use my left hand. They have paid this centre of excellence hundreds and hundreds of pounds for this advice.

We asked for the videotape evidence to support their claim. My OT viewed it with me. They sent only the clips in question. It showed me using my enabled yes/no with my right hand. The OT pointed out to them this simple plain truth. O they said, we've made a mistake. And so another year in my life goes by, another year in which I become further habituated to my mother and more scared and cynical about the authorities. That's been this year.

The National Health Service provided a new consultant clinical psychologist to help me deal with my fears a couple of years ago. I got on well with this psychologist, I don't know why, I didn't mean to but he wheedled his way in and befriended me. Then one day after more than a year (ie last September) a letter arrived saying he'd been taken off the job. My new consultant paediatrician wrote to protest saying I had a clinical need for continuity. The MP got involved. My mother wrote letters. She involved the Community Health Council. Eventually the powers that be decided I needed a complete new psychological assessment (this in addition to the LEA's reassessment which had stopped collecting information 12 months earlier but was still awaiting some reports). Interestingly this new psychological assessment was conducted without my presence. My mother was grilled but luckily she took a witness. The man in charge would not explain to her procedure or who was involved. She was very upset indeed. It therefore came as a surprise when the psychological reassessment concluded that my existing psychologist be re-employed and should work with me indefinitely and the funding would be in place for as long as he and I felt it necessary, though having said this I now only see him monthly instead of weekly because of constraints on his time. It took 7 months to get my psychologist re-instated.

Also during this last year, I have attended a series of meetings at which we were assured by the senior LEA manager that they were now going to resource me, that they were really trying to meet my needs. But in almost the same breath he said that he was minded to withdraw my hydrotherapy provision with immediate effect. In my existing statement, my hydrotherapy is a section 3 provision and the LEA have legally to provide it. In the new scheme of things proposed, the LEA have decided they don't want to pay for it any longer and since Health won't, I'd have to go without. My psychologist had long before advised them of its essential nature to my psychological and physical health. He's been there with me, knows what I do in the water and the dangers lurking of heart problems and deformity and intellectual lethargy if I am "confined " to a wheelchair. During the last 3 years the LEA have provided 2 things for me - 3 hours a week with my art tutor and 2 hours a week hydrotherapy (most of that's spent changing not in the pool). Now I was supposed to believe they were moving into gear to resource me in compliance with the law and meet each and every one of my special needs - my physical needs, my emotional needs, my social, my intellectual etc - but they were cutting out one of my two successful stuffs for financial reasons. They must have saved so much money by not resourcing me for 8 years that one would have thought they could afford a bit of swimming in a warm pond.

But that is not the point. The point is that they are still ignoring the advice to them by those who know me and whose advice they ought to be heeding, they are still playing a nasty Tom & Jerry game, they are still ignoring the rules which say that needs have to be met and it's a needs-led not budget-led system. And the point is that I cannot cope with it. I cannot cooperate with it because I am too overwhelmed by fear. The tension does not leave me, it's there haunting me and jeering at me through nightmare after nightmare at night. I run but I'm going backwards. This year's been spent trying to retain the paucity I have. My father's retreated in workaholism, my brother has succumbed to stress horribly scarily and violently in ways he doesn't want me to discuss but the violence is not directed at others, my mother is overburdened and at the end of her tether, begging for pills to restore her resilience. The entire family is at a standstill now.

I want to be independent of my mother because it is so counter-productive to be dependent upon an ageing person whom I shall outlive given half a chance, it is counter-productive to be dependent upon just one person. And yet I am now so buckled by fear of anything to do with those people who can afford to resource me that I am hiding. I face an enormous challenge to rescue myself from this predicament. It would not be scary if I was in control, if I had the funds that a birth accident child has or a road traffic accident victim, if I could dream dreams of financial independence, an ending of this dependence upon decision makers who thwart me and hurt me. Maybe to you I sound mad. Maybe you have a built-in belief that those in power make wise and just decisions, that there must be more to this than meets the eye. I cannot persuade everyone everywhere to take me seriously. I can only hope that enough do to help me become safer.

My OT and my psychologist are setting up an independence fund for me and are willing to act as legal trustees. They do not believe I will be resourced by the state in accordance with my desserts. They have watched for too long to be optimistic. Now they advise a different course of action. There's quite enough stress to cope with being me trying to get on and lead a life. I just can't cope any longer with the added burden of mean, petty and vicious state bureaucracy.

If you want to contribute to my fund please e-mail NedMueller@email.msn.com and he will tell you how you can. There will be a website up shortly at www.hojoy.com

I am a thirteen year old girl with a locked-in syndrome caused by a profound apraxia of all my muscles and the retention of dominant babyish reflexes. I am a wheelchair user and need complete care. I cannot make voluntary sounds and therefore cannot speak. Spelling is my greatest delight as it affords me the freedom to direct the course of my life. I crave acceptance as a really quite ordinary person, with an artistic temperament and a nice enough personality. On the whole I prefer adult company to kids', and my own company to 'most any other. I am bloody-mindedly independent and rarely acknowledge the wisdom of my mother's grey years.

I live in England, in the same town as I was born in but I love my mother's native land of Scotland even more. I also find Venice hard to eradicate from my mind, it swims like a tantalising mirage on my horizon informing my tastes and swelling my longing need to be truly me. I used to say that "I yearn to visit with people beyond Europe but have not a lot of dosh available for such sojourns". Last year I raised the money for my first big journey and changed my life immensely.

I need quiet. I hear music in my head a great deal of the time in a way I have come to accept is unusual. I was a composition student on a part-time Intermediate place at the Royal Academy of Music in London, participating alongside the undergraduate and graduate students when I was 9 years old, but they abruptly terminated my place and thrust me into a terrible depression.

Since then, I have veered more towards writing and journalism, by inventing FTW and becoming a BBC Video Nation correspondent and some other initiatives, but I also have leanings towards the visual arts. I am currently building an ambitious installation, am continuing to develop my photography, and if I could find more time, would out the visual aspects of the two autobiographical ballet scores I have completed and organise some performances of my poetry.

I am slowly building my way towards a book. I have not lost sight of the Third World even for a moment, or of my responsibilities. More info in cv. 

RAYMOND BETTS

SUICIDE

They have that room here.

Perhaps they have that room everywhere.

But, they have that room

Here. In that room is nothing.

Nothing but you and a mattress

Stained and pitted and torn and scarred,

The lights overhead very bright,

The outlets covered with silver plates,

The floor spotted linoleum

Beneath a window with venetian blinds

That open and close, open and close

As they look into that room.

There should be nothing in that room

But it is crowded. There are scents.

There is the essence of someone's darkness.

There is the darkness of essence.

There is nothing there

but you.

___________________________

Ignoring Richard

It might not be a sin, it might

be something worse, another significant echo

like the ghost of a secret child

a reflection of hurt too close to home

to be acknowledged, or discussed. She

is so forceful, after all, and ours', and seems

so sure and strong minding their money doling

out bus fare (and working

two jobs tolerating in-laws balancing

checkbooks and jobs and shopping and cooking and

maybe she is in charge and should be and it is

not only to be desired, but desired, but ...) -- still, Richard's

habitual reticence

could be more than resignation, could be fire

smoldering under wet tinder or a rattler's winter hibernation

or only constant pain stoically contained, lonely ego satisfied

through silent suffering ... How perverse that is I know

so more so now I let fly what I never

would have even given wings before, another phenomenal echo

except it echoes here, this fading place I fought to make

our home, so it cannot be discussed, or often

acknowledged ... How sad that is, and all of it, all

of this moment for almost every good person

I know, the perverse and twisted cruel prospering

like there's no tomorrow ... How easy for each of us

to crawl inside and hunker down behind barricades

defended at the least provocation, and utterly, lines

we let the world draw defining how far anyone

(ourselves included) is allowed to go, how near

the world can approach before our panic takes control

and our hands

thrash out, tongues spasming words venomous

as our love isn't, echoing the intensity of our fear

and our terror at our fear as overwhelmed we relinquish

what should be while embracing the artifice of static tableaux

of words not only unspoken but unknown while

unrighted wrongs everyone recognizes cannot be

acknowledged, or discussed. Or, so it must be or

we would not assume control or accept appearances

of control, rather each accept and open love

all others bailing out this boat like there is

no tomorrow, bringing out ourselves allowing space

for others to pass through so they too may be

acknowledged and included as members of the ever-lasting

conversation equal as each other there, counted-in

and recognized, drawn-out with humor, coerced

with care, fearless, and avidly loved.

Raymond Betts resides in his hometown of Lubbock, TX with his wife, Linda, and a shitload of cats. Father of four and the son of a career soldier, he served honorably as a medic in Germany and Vietnam, and has held the usual wide array of jobs poets and authors who don't teach fall into. He is working to finish his novel and complete a collection of his poetry. He can be contacted at dreamrayven@hotmail.com.

SHERRI BROWN

Lots of people complain about life, but what are they complaining about? They have too much work to do, they need an extra hand to get everything done. Have you ever thought about those that only have one? Life is very hard for those that are "different". Have you ever put yourself in the position of someone who is different? Have you ever sat in a wheelchair and watch people stare? Do you know what it feels like to be different? Do you even know what different means: "Are they normal? Can they swim? Can they eat? Can they talk? Can they draw? Can they see what I see?"

I am talking about people with disabilities. I have a sister who is 18 years old, who has Cerebellar Hypoplasia, or simply, an underdeveloped cerebellum. The cerebellum is a part in the brain that controls muscles and balance. When someone is said to have an underdeveloped cerebellum this person has weak muscles, and does not have very good sitting or standing balance. My sister, Alyssa, was diagnosed with this disorder when she was a baby. She was born this way, but doctors did not know what was wrong with her until they saw that she was not sitting or crawling at a normal age. Alyssa's speech is not as clear as mine because she has weak muscles. She is also learning disabled, which means that she has trouble reading and writing.

As her younger sister, I have learned a lot from her. I learned that you never judge people by how they look, how they talk, how they walk or that they use a wheelchair. I am very close to Alyssa; we do just about everything together. I can't say that it's just like having a "normal" brother or sister, because she is my only sibling. There are things that I can do that she can't. For example, I can walk, and I can run. I don't have any trouble speaking. It's very hard for her to see me going in and out of stores when she can't because they are too small for her wheelchair. Alyssa can walk with crutches or a walker for a short period of time. Still she will not ever be able to walk without them, no matter how much therapy she gets. Not every store is handicapped accessible. Some stores are too small for Alyssa to get in and out of. It's very hard because some people don't care to make changes for the "different" people.

Alyssa and I are the best of friends. She is friends with my friends, just as I am friends with her friends. She means everything to me. From Alyssa's point of view, she realizes that she is disabled and is different, and can't do everything a "normal" kid can. I am Alyssa's best friend. I am like her extra hand that everyone needs. I am always there to watch her do anything she has accomplished. For example, she participates in the Empire State Games for the Physically Challenged. She does many events, and I am always there to cheer her on. I also go to all of her school basketball tournaments because Alyssa is a cheerleader.

Sometimes its nice to get away from her, just like everyone who wants to get away from their brother or sister. She can be very annoying, just like everyone else. She loves to shop, and spend money. Her favorite things are boys, pocketbooks, and makeup.

Alyssa goes to a special school for the disabled. She has great friends who I am also close to. I am a freshman in high school and if Alyssa went to the same school as me she would be a senior. At times I wish that she did because when I started high school I was scared and all my friends had older brothers or sisters to show them around the school.

Alyssa gets physical therapy, speech, and occupational therapy. She has therapists come to the house to work with her to build her up. I see everything that these therapists do. I decided that occupational therapy was a great career and I want to pursue that as a career. Everything Alyssa does has an influence on me.

I once went to the mall with Alyssa and she said that she wanted to walk, so I sat in her wheelchair, and went for a ride. No one at the mall knew who I was, but they saw that I was in a wheelchair. People stared, little kids asked their parents what it was, why I was in it, and others just smiled feeling sorry. You don't know what it feels like to be "different", even though you may sit in that chair for a few minutes. I got just a small feeling of what it is like. You can never know what it feels like even if you sit in the wheelchair for days because you're not the one living that way.

Alyssa's friends are my friends. I talk to her friends on the telephone and on the Internet. Some of her friends have brothers my age so it's nice because we can all get together. At times it's very hard for Alyssa to watch me leave the house with all my friends because she knows that she can't go. Although she does come along sometimes, I need the break.

Having a sister with a disability gives me more responsibility. It's worse than being an only child. I have to do more chores around the house because she can't. I always have something to do; my life is never calm. Sometimes my mother asks me to help her with her bath because she can't do it on her own. I have double the responsibility than a "normal" child would. Sometimes my parents will run out and I have to stay home and keep her company. Occasionally I have to alter my plans to stay home with her. It's like having a little sister that will never grow up. Alyssa has an aide to come and help her, but sometimes Alyssa complains that she does not need the extra help, that she can do everything herself even though she can't. Alyssa tries to be independent. She tries to get herself ready in the morning and do her own makeup.

Everything that I do has an influence on her. For example, I had gotten my ear pierced for the 3rd time. Alyssa had always told me that she would never do that, and two were enough. Once she saw that I had gotten it done, she went to the mall the next day to get her 3rd piercing. I am her role model.

I babysit every week and Alyssa knows that she can't do that. She gets very mad sometimes when she sees that I can go out and get a job, while there are very few jobs out there for the disabled.

I have gotten very involved in working with the disabled. I enjoy it very much. I have volunteered at United Cerebral Palsy (UCP), as well as at a sleep-away camp for the disabled, and the Empire State Games. For two years in a row I volunteered at Alyssa's sleep away camp. I spent 9 days for two summers working with the disabled. It was very rewarding, and makes you feel better about yourself. I also met a lot people and learned about the different disabilities. It was a lot of fun and it was a great learning experience.

I have thought about life and what it would be like if Alyssa were able bodied. Sometimes I sit in bed just think about how my life would be different. Everything would be different. I cannot change the way Alyssa was born, but I can help her to feel good about herself, and tell her that she is perfect the way she is.

Our house is accessible for Alyssa. We have a stair glide that she sits on to go up the steps, we have a ramp in front, we have handlebars in the bathroom, and a special lift for the car. To me my house is normal, but that's because I live in it. When Alyssa and I go to someone else's house and she calls because she needs help in the bathroom, I ask why, forgetting that my house is "different". To get around in our house she crawls or uses her walker. Her room is decorated in her favorite colors- pink and purple. She has a low bed so she can get on and off easily. She has a low nightstand where we keep her telephone so she can reach without a problem.

I love Alyssa very much. I love her for who she is. My life as her sister is very different from a "normal" kid my age. I believe in her and believe that she can do anything she wants to even if her problems get in the way. Alyssa is "different" but is a very "normal" teenager. I will always be there to help her with whatever she may need. I am her sister and her best friend for life.

SASHA CAMACLANG

"The Child’s foot doesn’t know yet that it’s a foot, and wants to be a butterfly or an apple."

These were the thoughts in my head a long, long time ago. What does a child know of life? Of perfection? That the human body is a place that can never fully be discovered and understood. I had a congenital hip dislocation, my left leg is shorter by a couple of inches. I had gone through one major operation and two other treatments that until now I failed to understand, in between were therapies that started and abruptly ended, unfinished. It is a slight matter I tell you. And it embarrasses me to talk about this. I come from a third world country struggling for so long to alleviate itself of corruption, poverty, and ignorance. These are issues that I consider important to talk about.

I have italicized the first paragraph because this was a very important period in my life. As I write this down, it amazes me that I am writing something so personal. I remember that day well. More than myself, I was worried for my parents. How much trouble I was causing them. I had made a decision. Enough I said, I don’t want to see doctors anymore, breathe antiseptic air, and feel cold steel as I support myself at the balance bars. I wanted to live a normal life. I want to be at the company of children my own age not sick and bedridden, but robust with color on their cheeks.

During school hours we were herded about by teachers like cattle in a farm. I went to a Catholic school. There was absolute order in things wherein every moment is punctuated by a prayer. The teachers led and we followed. After class everything was different. We were left to our own devices until our parents would pick us up from work. The classrooms were empty. A heightened sense of chaotic smell surrounded me. Children zigzagging on school grounds in a game of cops and robbers. A mixture of baby powder and perspiration. Corridors littered by half-eaten sandwiches and junk food wrappers. Rotting vegetable, bread, and cheese. Hospitals rob you of this sense, I learned. They wipe out and spray over any source of smell that a patient produces. It placates patients, that their sickness is concealed through antiseptic. It is in this fake comfort that we live through our stay in hospitals. I followed them breathlessly, tripping along the concrete pebble wash out corridor, slow in my unsteady gait. I carefully observed which group might be willing to take me in. There are the boys and the girls who roughly played together in a game of cops and robbers. The athletically built girls who leaps and bound to a game of Chinese garter. I went with a group of girls who chose to amuse themselves by picking on the makahiya. A plant that shied away from our touch, folding its tiny leaves. I was happy to be finally part of something of the moment. My new friends clasped my hand firmly, and led me to their fine dance of play. They brought me to their secret grounds at the back of the school chapel. Sat on the curb, and picked on the flowers that had fallen from the bougainvillea. We giggled a lot. Our voices concealed by the wide bows of the bougainvillea plant overhead that embraced us. We would lay down on a field of grass, the earth on our backs warm and comforting. Sometimes our eyes would be closed, each of us in the privacy of our own thoughts. Sometimes they were open and alert. Staring intently amongst the blades of overgrown grass in anticipation of a dragonfly’s presence. We would clip its wings and marvel at its colorful netting. God is fair, we decide pontifically. He, who made the fly that spits on our food, also gave us this beautiful bejeweled insect. We would sun ourselves below the blue afternoon sky, shadows of clouds would pass through our bodies like a benediction from God. I felt for once blessed. It was unforgettable.

From this point in my childhood I stop this narrative. Other events that followed seemed to be less memorable and more painful. It’s one of those memories that had pushed me to pursue any goal that comes into mind when everything and everyone seems to stop me.

KEVIN CHILDS

>You ran away from home when?

I first ran away at 12, but was returned home by police 3 days later. The second time I ran away from home was at 14 and spent the next 23 years living on the streets, sleeping where I could and going in and out of jail. I also attempted suicide numerous times.

>Can you remember your first night on the street?

The first night was scary. It was very cold. I ended up sleeping at the top of the hallway stairs, near the roof, in an apartment building. The sense of aloneness was the most difficult aspect of my experience. The fear I felt was terrifying.

>Were you street-wise or doing something out of desparation?

I was street-wise, but in retrospect; I was pretty naïve and foolish. I ran away because my mother was going to sign the papers so that a neurosurgeon could perform experimental surgery on me to stop the seizures I was having from my epilepsy. I was scared of the thought of someone cutting my skull open and messing around with my brain by using laser surgery.

>What was the matter with home?

The matter with home was my mother trying to protect me from the world after the first gran mal seizure. The seizures were not controlled by anticonvulsant medications. Plus, I never fit in with my family anyway -guess you could say I was a bad fit (I am a shoe ;).

>What was the worst thing that ever happened to you?

I have been shot at, stabbed, but the worst thing that happened to me was picking up drugs at 12. I would never have attempted suicide so many times were it not for the drugs.

>How did people treat you?

People treated me like the punk I was. I thought I was tough and didn’t need anyone or anything, but by 17 found myself hooked on drugs and unable to get off them. Needless to say, parents hated me because they all knew I was dealing drugs - to their children.

I also had seizures in the streets and people would walk right by me and go on their merry way.

Some people would rifle through my pockets and rob me. Once, someone took a 14 karat gold plated medical emergency necklace.

>How did you live - what was a typical day like?

A typical day would consist of waking up cold and very lonely, having a seizure, and then I would steal some rolls and juice from outside a grocery store to eat for breakfast. Then I would begin by getting high, selling drugs and/or hustling to get money for drugs. By 22, I was no longer selling drugs, and was stealing to get money for drugs.

>What got you off the streets?

I was 34, in jail with 8 felony charges and facing 8-10 years in prison. The court appointed lawyer failed to show up for the 27th time I went to court, so by then, the judge and I had pretty much become friendly towards one another and he cut me a break and gave me a sentence of time served and 5 years probation. I was released from jail on 28th November 1989, and entered a self-help program and have been drug-free for 10 years, 5 months and 20 days.

>Do you like sleeping rough still? has it attractions?

Yes. Even when I have an apartment, I do not feel quite at home inside it. I guess you can say that there is a "call of the wild" in me from the years I spent camping out in New York City.

Yes. The attraction is being able to go wherever you want, sleep where you want. Sort of like people lived in past centuries - exploring.

>Have you reconciled your differences with your family?

Yes and no. I have reconciled my differences with my Mom, but not with my sisters or brother, or son, hence, I feel like my actions hurt them, and deep down, I have to accept that no matter how alone in the world I feel - it was my doing.

>Thanks for the e-mail interview. Got a few more questions:

Your Welcome HoJoy!

>When you first ran away, did you expect the police to come and find you again? Did you want to be found and everything to be made all right?

No, I thought I would be able to live a carefree adolescent life, but the police soon ended that. No, I wanted to be a runaway and get away from everyone, Mother and the various societal systems which suddenly began dictating what I could or could not do - heck, I was the first midfielder for the soccer team which scored more goals in half a season than anyone ever did in an entire season, I also quarterbacked the football team to a league championship, and our school’s baseball and track team were all-city!

The school, the doctor and my Mom made sure I was unable to play sports of any kind. What hurt so much was I had finally felt like I found my place or niche in society and in school. I had dreams of playing soccer abroad (as they did not have professional teams in the states then), and had also passed the test for a high school with a good football team, but all my dreams were soon turned into a fantasy, never to be fulfilled.

This hurt me very much. To this day, I do not think I have ever come to terms with the oppression against me just because the medical doctors thought that epileptics could not participate in sports. Hence, I believe this to be a major reason as to why I picked up drugs.

>Were you from New York and living in your own city or were you from elsewhere running away to New York City?

I was from Brooklyn, New York. I spent my life on the streets in Brooklyn. The only times I went to Manhattan were to buy heroin and cocaine.

>If the former, did you hang around near home or steer well clear?

I stayed in the neighbour-hood but steered well clear of home and relatives.

>Did you get in touch at all with your family or cut loose?

I cut my family loose and they also cut me loose. I was a shame, you know, black sheep of the family and all that.

>Did they know about your dealing drugs, going to jail, attempting suicide, etc?

Yes. My family knew what was going on with me. I sold drugs about 5 blocks from where they lived. I had attempted suicide the first time only 3 months after I got the epilepsy.

I saved up 3 months of medication that is a barbiturate and took 90 tablets. My sister found me. Then I was off to get my stomach pumped at the hospital.

>What, if anything, did the authorities do to rehabiliate you, support and develop the wild young thug rather than punish you? What was your response?

The authorities kept sending me to Alcoholics Anonymous, but I was 17 and could not identify with what the old people were saying at the meetings. The authorities did absolutely nothing to rehabilitate me, as a matter of fact, I attempted to enter a therapeutic community but was denied because I was honest about my suicide attempts. My response was to keep getting high, then I enlisted in the army in 1973, but had seizures inm front of everyone, so they said I could stay on as a secretary, or leave and foolish me, I chose to leave - just think of how much I could have learned about the internet when it was in it’s infancy!

>Do you with hindsight know how you would have liked the world to have been?

>How should society treat the teenager you were?

I would have liked to be treated equal in all respects to the other kids without disabilities. I see no reason why Attention Deficit Hyperactivity Disorder, Conduct Disorder, Oppositional Defiant Disorder and a Seizure Disorder should have prevented me from participating fully in all aspects of life!

HoJoy, these labels made me feel as if I was a disorder! Meanwhile, I was acing school with 97’s acroos the board and I never studied. I had all my homework done by the time classes were finished. Tests were a breeze, and as it turned out, this disorder (me) had the highest IQ amongst my classmates.

>Given the fear, the cold, the mean toughness of street living, given also the freedoms eg to roam, what was it like being cooped up in jail?

Being cooped up in jail was a nightmare. I would pace in the cell all the time, like a lion at the zoo. That is why I always plead guilty in court, because it, plea-bargaining was the fastest way to get released and I wanted to be outside getting high, nor cooped up in a jail cell.

>Did you get less lonely after that first night / over time? did you find mates? Join a gang? Did you get less scared?

Yes. Soon the loneliness became my friend. It was a very peaceful experience sleeping on the streets once I got used to it. That took all of 2 weeks.

The one constant was fear. It will always be there. However, I believe the fear is what kept me alive.

Yes. I found a bunch of mates my age and older who were also runaways. We did a lot of drinking, drugging and stealing. Regrettably, we also hurt many innocent people because we wanted money for drugs. Most of my mates died young.

I did not join a gang, but instead was one of the founding members. I quit hanging around with the gang after 1 year. I was tired of the gang, like school, it became boring real fast.

>How did you get shot? I assume you wound up in hospital? And stabbed?

I got shot at, but was never hit. Bullets whizzed by my head fired from only 2 or 3 feet away on one occasion. The other shots missed me because the people were afraid of coming too close to us, or were fired from cars, and rooftops. I guess I am lucky because someone has been looking out for me, all my life! J

I was stabbed in the hand once, tearing the ligaments on my right hand and had to have surgery. My cousin also sliced me in the stomach, but it was more of a scratch than a stab, so it was nothing. One guy put a butcher knife to my neck, and I lifted my left arm and got the knife stabbed straight through my arm, in one side and out the other.

>What do you feel about those of us who lead comfortable middle calss lives for whom this world is just a tv fiction?

I resent kids who grow well to do, and have parents that will get them everything they want or need. I think that it is just part of the experience of growing up poor.

>Did you care whom you stole from? Did you draw any lines? Or did you not stop to think?

At first, I just stole. As a matter of fact, the first time I mugged someone I stabbed him because he didn’t give me the money fast enough. I regret it very much. Some older guys convinced me to mug him just because we wanted to get a few more beers.

I soon began caring whom I stole from. I focused on stealing from companies who would not miss the money. Then, to my astonishment, I found out that the people doing deliveries were working for themselves, not some company, so I stopped stealing from them, and started hustling to make money by collecting copper, aluminium and brass and then taking the metals to the scrap-yard.

>Did you encounter do-gooders? church soup kitchens etc. People with voices who make one cringe they are so "worthy" and "nice" and seriously unable to understand where you're at?

Not really. There were good people occasionally, but not many do-gooders who do good because it is their job and they get paid. I am not against people getting paid for doing good, but most do-gooders do more harm than good.

I avoided the soup kitchens and fended for myself. I stayed very far away from places like that. Most of the time, I could manage to get what I needed to see me through the day. Today, I now know that it was God’s grace that got me through the day!

>You must have seemed to many people unredeemable, a no-hoper, dross. Was it a struggle to get out of that lifestyle? What help did you get and from whom?

It was a very big struggle to get out of that lifestyle. I got help from people who used to be just like me. Sort of like, the sick helping the sick, or the sinners helping the sinners.

First, I was mandated to a outpatient drug program started by a former prisoner. He discovered the connection between his drugging and ending up in jail for committing crimes related to getting money for drugs, or getting busted while buying drugs.

A few of the counsellors were former prisoners, and addicts themselves.

>Do you feel most kids like you were can turn their lives around? (given the right attitude or opportunity)

Yes, very much so. However, there were very limited opportunities for kids my age back then. Even when I got older, there was very little opportunity for people to get help. Frankly HoJoy, most do-gooders do not give a damn!

That is not to say that there are do-gooders who do care very much and want to change the system which oppress people with disabilities and would rather hold us down, spend so much on disability checks - which barely cover our rent, but these people are far too rare. Most do-gooders are bogged down in paperwork. This prevents them from helping people the way they intended too when they first became a do-gooder.

>Does it begin to seem a long time ago, another you, another time, another place? or do you feel connected still to that person?

I am very connected to that person, but am afraid to let him emerge. He is a good person, but is much to quick to use physical force. I do not want to hurt me or anyone else any more.

>You've told me in our previous exchange of e-mails about quite a few acts of kindnesses you've extended to others. Can you elaborate for a sentence or two on either / or the principles by which you lead your life, the lifestyle you now have.

The lifestyle I live now is pale into comparison to my former lifestyle. I miss the excitement of the streets. I cannot pin it down, but the streets were fun to be on - something was always happening that got one’s adrenalin pumping.

The acts of kindness that I consider worthwhile were the 7 times I took complete strangers into my apartment after I was off drugs. It was nice to see six of them get drug-free and move on with their lives. Unfortunately, one decided to keep using, so I had to ask the person to leave.

I have a link with homeless people that can never be broken. Yet, I do not give to those who beg. Instead, I choose to give to those who do not ask for money.

I have also done a lot of information research for people over the internet whom I have never met. A few times I have been fortunate enough to meet people in person that I have met through the internet. That is always nice to meet someone and put a face to the words you read on the monitor.

The principles by which I lead my life today are always evolving. As a matter of fact, I have met people at a crisis house, called "Anam Cara" which means "Soul Friend" in Birimingham, UK. The healing and personal growth that occurs there is beyond anything I have ever seen. The approach is simple: " allow other people to make their own decisions and pay the consequences or reap the rewards!

Fortunately, the majority of people who pass through this place of learning take responsibility for themselves simply because they are given the opportunity! Psychiatry has a lot to learn from Anam Cara. I know I have learned much, and more importantly, Anam Cara has been a very healing experience for me!

>You've got family in Ireland you visit with. Are they ignorant of or accepting of your past? Do you find people as inquisitive and interested as I am in your past? do you get fed up with dragging it out and isplaying it?

Yes. I visit my relatives in Goath Dobhair, Donegal. They know all about my past and are very accepting of it, because I am off drugs now and as one relative said: " life is too short to live in the past" - enjoy it while you can, because you never know when it will end.

>Thank you very very much for allowing me to prod around into all these personal memories.

You are welcome very very much HoJoy!

>Sorry you don't want to supply any biographical paragraph. Would you prefer this to be published under a pseudonym? eg Kit Cochrane, Kenneth Cockburn, Karl Chubb (all of these come up with no results on the Excite search engine.)

No. Publish it under my name. Kevin Childs.

Check out the following links for more information on Kevin:
http://www.tiua.edu/American_Studies/Fall_98_Classes/adv_eng4/class_sessions/session2.html
http://www.cyber24.com/htm1/1_13.htm
http://home.att.net/~kcisfree/

MICHAEL COHEN

THE EPIDEMIC OF MIDDLE CLASS SCHOOL VIOLENCE

The scene has become all to familiar in American homes. We turn on the evening news as dinner time approaches and as the picture comes into focus, we feel a sickness as we see the solemn face of a newscaster, with the large, bold letters "SHOOTING" and the icon of a school bus in the background. Another of our public schools, once sanctuaries of learning and innocence of our children, has become the scene of a tragedy.

We see the scenes as if part of a recurring nightmare…the yellow police "crime scene" tape, the paramedics with stretchers rushing young victims to waiting ambulances, the hysterical cries of distraught parents clutching each other. For a moment we pray that no lives have been lost, then we feel that despair and find our own vision blurred by uncontrollable tears as the backdrop behind the newscaster shows pictures and names of children and teachers who will never come home.

While the phenomenon of murder on school grounds is not a new one, the manner in which these tragedies have taken place over the past decade is alarming. While we all still feel tremendous sorrow over the loss of tiny lives at Dunblane, Scotland, and similar shootings in the US by adults, there is the minor consolation that we can never predict the actions of a madman or know when a seemingly normal adult will turn irrational. We may console ourselves that no one is to blame for having failed to prevent the horror.

The alarming nature of the latest trend, however, is that children are being murdered by their peers with increasing frequency. Prior to the late 1980’s, such incidents seemed confined to urban schools where broken homes, gang activity, drug dealing, and other sources of violence proliferated. Over the last decade or so, however, several dozen children have fallen victim to other children of middle class families, children who would seemingly have no motive for such unspeakably heinous behavior. It is thus not only the fact that we have children killing children, but the fact that socioeconomic factors no longer seem to play a role that is so frightening.

My personal interest in this issue came in the nature of what some might describe as a calling. My parents lived in Jonesboro, Arkansas for 13 years, and although they had moved away when four middle school girls and their teacher were killed by two boys who were also students at the school, something else died that day – the belief that prepubescent children were incapable of perpetrating such horror.

I watched the scene unfold on March 24, 1998 as I walked into my barber shop to find my barber, Shirley, in tears in front of the shop’s television. In a split second I realized that this marked the second time in my life that my attention had been drawn to Jonesboro by a senseless murder. In 1988, approximately one year after my parents moved away from that small southern US city, they were forced to return by the news that their best friends’ home had been invaded by serial killers, and that the wife had been shot for no apparent reason.

The following Saturday morning, March 28, 1998, I was teaching an engineering class at Old Dominion University. It was a bright spring day and the college was having an open house for the local public schools, so there were children of all ages wandering over the campus. I was in the middle of a lecture on reactor physics, walking in front of the chalkboard toward an open window, when I heard the sound of children laughing from outside. Suddenly the innocent little faces from that CNN broadcast a few nights before came into my mind and I realized that I could not see through my tears. I barely held my composure long enough to tell my class to go on a break…

It was then that I knew I had to do something to help the families and prevent further violence. That afternoon I wrote a poem and the following Monday I found a memorial website that had already been set up by Jim Welch, a local contractor in Jonesboro. He was glad to add my poem, and accepted my offer to help edit the website. That site can be found at http://www.fastdata.net/~nebulus/memorial.html and my poem can be found by clicking on the "Poems" link. The site also contains a condolence message board. Through which I have since come to know many families and friends of victims from school shootings elsewhere in the country.

I have also since set up a special web page on the Cyberangels site to unite the different communities, http://www.cyberangels..org/schoolviolence, and with several other volunteers, I am helping to organize a national gathering in Ontario, California, USA, later this year. The website for that gathering is at http://www.geocities.com/the_gathering_in_ca.

I will not bore the reader with a detailed analysis of every shooting here; a brief news search will produce reams of accounts, and all are variations on the same horribly predictable theme. The real tragedy in all of this is that every one of the perpetrators had parents, and at other times were under the supervision of responsible adults. In every case, they made blatant threats. In every case, an adult either provided the perpetrator with a firearm or by irresponsible actions allowed firearms to fall into young hands. IN EVERY CASE, RESPONSIBLE ADULT BEHAVIOR COULD HAVE PREVENTED THE UNTHINKABLE.

It is human nature to want to find a culprit and to bring that culprit to swift justice. What investigation after investigation, and the use of a little simple logic, have proven, however, is that several factors in our modern society have contributed to the lethal mix. Children are being influenced by more than just their disputes with other children.

While one might argue that the easy availability of firearms in the US is a huge factor, and the American sportsman is always an opportune scapegoat, it must be observed that shootings have also happ