I am profoundly utterly horridly uniquely disabled, unable by myself even to cry out in shocking pain, unable to speak. They call it a type of locked-in syndrome, locked-in by chaos not paralysis. So what. That's the way it is. There's a darn sight more to me than a dud useless body. I need to be me, I need to be accepted and responded to as me, the self I feel myself to be. I am dependent upon others for all my care, dependent upon hands-on help even for communication and defecation. Yet I am no passive child.

I invented a webzine and won a prize. I raised �12,000 in 6 weeks to skip through Tanzania and Bangladesh (hosted by international schools) in order to slam myself into the hard realities of poverty, inescapable but avoidable disease, the company of gentle disadvantaged individuals and inspirational aid workers en route to the prestigious prize-giving in comfortable Oz. I rushed on to meet Kofi Annan in NewYork to discuss the hurts I felt because of my journeying, to be taken seriously as proactive and unstoppable.

Anyone can thwart a vulnerable crip child. I spend my life adrift with my imagination waiting till I am again empowered to be me. I bellow my voice loud. My autobiographical ballet neatly scored told the story of my early years frustrations and gained me access at 8 to undergraduate classes at the Royal Academy of Music. Bliss doesn't last. I don't fit in. Sometimes I just curl up in despair like a hibernating wet blanket awash in self-pity.

I am glad of this opportunity to tell my story. I have quite often been the subject of media interest. You won't hear me that way. I am blandified or cute cripped into gentle sensationalism, a human interest story. My anger at the power of bullying bureaucracy, my anger at the obstacles I have encountered, my anger at the disregard for my precious precious time, the eroding of my energy as I fight the ensuing misery, depression, frustration, these are all glossed over. I have so much to do. Kindly efficiency in minimising the impact of my disability is all I ask.

I am a firm believer in collective action. The woman who first propelled me into this by inviting me to speak at a rally at the DfEE and later by encouraging me to submit evidence to the House of Commons Inquiry into Highly Able Children gave me a badge that is still propped up on my computer and reads "Never doubt that a small group of thoughtful committed citizens can change the world: indeed it's the only thing that ever has". I have been asked to talk about my own experience but I assume it's not my quirks but stuff that's more generalisable that may be of interest, the stuff of collective action, so I thought I'd talk a bit about my feelings at some of the pivotal points in my life, those moments when decisions could have gone other ways.

I suspect my mother was in a bit of a state but I only have family reports to go by. In my case there has never been a clear-cut diagnosis except "unlike anything I've ever encountered", in other words what I'm not, but stage 1 equaled "don't worry, not much the matter with her", stage 2 equaled "what's happening about her global lesion?" (what global lesion, what's a global lesion anyway? my poor parents fret), and stage 3 equaled "she'll grow out of all her motor problems, she'll learn to walk and talk but she'll have severe learning difficulties..." Lesson one for parents: don't believe the so-called experts. Get on with parenting as best one can in as ordinary a way as possible.

I loved my early toddler-ish days. I loved being helped to join in. I detested therapy. I never noticed that some of my play was therapeutic. I didn't count things that mum invented as therapeutic I suppose. Playing with mum's help was fun because she listened to me. Therapy as I understood it was about plugging the gaps, about helping me to do the things that I couldn't just do and which I fancied were signs of stupidity in me because I needed to be taught them and however hard I tried I still couldn't manage any of them - I still can't. I can't roll over, I can't make a voluntary sound, I can't use any sort of switch. I shouldn't be telling you this when my mum is having to read out my speech but my mum has always been understanding of how memorably awful it is to fail in these simple ways, to be different from other children, because she can clearly recall being unintelligible at school to the point where they used to get her sister to come and interpret. It's very very important that my mum understood my feelings and didn't slavishly follow what therapists said. She fedback to them what I actually did, showed them what worked and didn't work, asked them for help with specific objectives so that therapy was tailored to me more and more. And she was always responsive and totally in touch with me. Well nearly always.

I remember the day I wanted to ask if I would ever talk and I couldn't of course, and I cried, but because I don't cry visible tears noone noticed my hurt and the day carried on unmemorably for everyone but me. It was only then that I felt trapped, not stupid, but imprisoned and frightened. I had quite enough imagination to be scared because its scary to be blubbering for mummy sobbing and sobbing quite unable to enjoy the sandpit, unable to enjoy what seemed like tediously endless painting and to have one's feelings disregarded, completely ignored. I was distraught and alone. I don't think I've stopped being scared since. I've just found that being busy distracts me from my fear. I used to think being busy led me away from my fear but it hasn't because I am still unfortunately dependent upon my mother, of which more anon.

The next milestone in my life was therefore the day of my liberation when a very straightforward thing occurred. I had been exploring all manner of communication devices and had a low-tech picture book for making choices. My mother was always expecting me to choose, to demonstrate the ability to understand and to discriminate. I happily obliged. I would choose the colour of my tee-shirt in the morning, whether I wore a skirt or trousers, and whether I had my hair in a ponytail or bunches, I would choose between foodstuffs at mealtimes, between colours for colouring in, between playing indoors or out, where to place my dollies. My mother tells stories of how I would put the little girl on the sofa with the mummy and daddy doll and put the little boy doll to bed. Obviously I didn't want to play much with my brother! Anyway upon this occasion, this memorable day, I was being seen for a second or possibly third time by a speech therapist from a well-known company who told mum that the device with 32 pictures would be too limiting for me, that I was so bright I needed the device with 128.

She asked mum what would be the 128 most important concepts for me and said mum would have to render them pictorially, and in addition she'd have to review and update it each week as I was changing rapidly. I quite clearly remember this. I was hugely excited. I thought it was going to be such fun. I was 4. It never occurred to me that my mother would refuse. Yet she was totally aghast not to say indignant. How on earth am I supposed to know what's important to Hero? How can I guess at what she might want to say? She was still indignant when dad came home from work but she'd got a solution by then. She drew out an alphabet on a piece of paper and said that 26 letters were quite enough for a bright child. Then she could say whatever she liked. Literacy skills were needed, not endless guessing work for her. As soon as she said I would be able to say anything I liked, I sailed off into such excitement I felt unable to think of anything else but how to make it happen. You know what grown-ups are like. They say things and then they just don't translate into reality. They promise treats, they threaten punishment, kids learn to take it all with a pinch of salt, but this had to happen. I was sitting on my mother's lap and she was explaining about the kids in my brother's class at school where she helped one afternoon a week. She was talking about a boy learning to guess the spelling of "bed" from the sounds b - e - d -. I lunged at the alphabet. Mum and dad stopped talking to each other. Can you spell bed, Hero? I did it just like I made all my choices, same as I'd always done, with hands-on help. There was no difference. It's only the choices that changed, became more abstract. I spelled dog, cat, man, simple stuff like that when they asked me to. Everyone was very excited. Mum redoubled her efforts to get me into mainstream school.

This became the next vital moment. I was burstingly full of pride. I was 2 1/2 terms late in starting school. My chronological peers left playgroup in the January but the LEA wouldn't let me start school. They hadn't completed the formal assessment begun when I was still 3. (In fact they didn't complete it till I was nearly 10.) When I turned 5, my parents insisted I should start but the school wanted to put me in a nursery class. My parents insisted I went in with my peers and had access to a proper curriculum. They won. I felt as if I'd won an international jersey or some such, I was so proud of my school sweatshirt. People remarked on it when I went shopping. It surprised people. It was a well-known mainstream school, it was my local school, it was where my brother was. I had to prove I was good enough to wear it. I was on a year's trial.

The first day went badly. They tied me into a chair and expected me to do things all by myself. They would not let me do gym. I was to sit and watch at one side of the room. They didn't see how I was going to fit in. The teacher admitted having nightmares about it. My mother said she'd show them how, and train my 1-1 assistant. It was a dreadful time because her father was dying in hospital and her mum was also seriously ill in the same hospital but I was only to go in half-days so she spent mornings in school with me and afternoons I went with her to the hospital. Between my grandpa dying and being buried, the school called a meeting. The head said it wasn't working. My mother pointed out I'd only had 11 half-days in school and a lot of progress had been made. The LEA's educational psychologist said the trial had to be a year. The OT and physio backed her up.

I stayed but I was scared I wasn't doing well enough. At every opportunity I told mum to go away and let me practice working with Mrs Smith. She always took me at my word and sat back to observe Mrs Smith's developing techniques. After 3 weeks Mum wasn't needed in school any longer. I could depend on Mrs Smith to empower me whatever activity I was engaged on and I was fully integrated into everything that the class did including skipping in the playground, walking the beam, climbing the wallbars, building with bricks, telling news, making things, doing sums and so on. It took me several more weeks to realise that I was spelling out things that other children answered by speaking and that they couldn't spell like I could. My teacher thought me very bright indeed. She called mum back into school to tell her I was gifted, and again to tell her I had a remarkable "photographic" memory, and again to see a particularly brilliant painting of a giant land snail and again to meet the county music advisor who came to assess my musical needs. As my confidence and competence around spelling increased so did my conviction that it was woefully inadequate for spelling out what I wanted to say. It sounds daft I know but I don't think I particularly distinguished between language and music in my head till after I could spell and all the music remained untouched. So I clamoured and clamoured for the din to be got out in such a way that it was perceived as a need because it oppressed me so.

I have to cut a long story short but my early success has not been built upon. The resourcing by my LEA has been extremely erratic. My enabler was not replaced when she left and I again became dependent upon my mother. My mainstream place failed, but it failed because of my exceptional ability. I became clinically depressed at being stuck among infants and a grammar school was sought for me when I was still only just 6. No grammar school wanted me. My music provision increased and I attended 2 prestigious London colleges but there was nothing underpinning it. Although the LEA funded it, my mother had the burden of transporting me, of facilitating my communication, of explaining me. It upset me a great deal that I didn't fit into school, it upset me a great deal more when I no longer fitted into the Academy. I don't think I stopped crying for a year. Noone seemed to care. I had nothing. My life was in ruins, my dreams shattered, my friends inaccessible, my self-expression thwarted, my isolation seemed total. I was trapped with my mother, and increasingly I could see that I was trapped by scepticism, scepticism because it's not normal to be always with one's mother, and it's not usual to be dependent on hands-on help. It's usual to master switches, it's usual to be able to show an independent yes and no. The extent of my individuality, the implications of my disability being apparently unique sank home when I could least cope with it. My sympathetic Health professionals could see my distress but applied a medical model and referred me to the Tavistock Clinic for psychotherapy.

I did not get along at all with my therapists there. Their first decision was that my mother constituted the problem, their second consequent upon this that I must not be allowed to communicate through her. I was too depressed to feel enraged. I was limp with terror. Having lost all forward momentum towards a glorious future when I would feel greater and greater empowerment, greater and greater control over my life, greater and greater self-determination and independence, I was now to lose even my basic means of explaining my unhappiness. After intervention by professionals who knew me in Canterbury, they agreed I should be allowed to communicate using my habitual means of doing so, and I should be allowed to get out of my wheelchair if I needed to too. They had an alarming belief that I belonged in it. They could not understand that I got stiff and sore after a 2 hour journey in the car and that I needed time out. I could not trust them to understand. I did not bother to explain anything to them.

My mother followed a different tack in trying to cope with my depression: amazingly she persuaded the LEA to supply me with internet facilities at home. She knew I wanted to talk with other disabled people. I didn't think I wanted the internet for anything but that. I just wanted some friends who would understand some of the difficulties I was having. My depression all but evaporated when I hooked up. There is of course a residual scar, a tender spot I seek to avoid but at least the healing process began, I stopped screaming in agony. I found something to occupy me. I found friends and I set up my webzine of experiential writing.

Unfortunately my LEA having got into trouble with the Ombudsman for neglecting my needs for 4 years (in a case I brought myself) decided they could sort it by re-writing my Statement and sending me off to a residential school without consulting anyone. The plan was kept from me for months on the advice of my consultant because he feared it would have a profoundly damaging emotional impact upon me, so that as I grew older I grew less involved in decisions taken about me rather than more so. I found out, but my mum had asked people to write to the LEA, people who knew me and whose advice the LEA would have to heed. They received a bundle of advice from 33 different persons, mostly professionally qualified, all opposing the LEA's placement plan in pleasingly strong and articulate ways. It boosted my morale hugely and made me feel so very unalone. I may be peculiar but I am not isolated. My mum may be thought mad, but not by those who know me. The LEA withdrew that proposal.

My LEA have still not got their act together. My original 1996 statement remains largely unimplemented. There have been complaints to so many people I lose track of it all but I, lack of provision not withstanding, continue to exist and must occupy myself somehow. I have a personality that does not allow me to give up, does not allow me to be passive. People who know me have remarked on it all my life, but I'm not an island untouched by what happens to me - I find it hard to feel positive when I am thwarted. I need to feel accepted and I need to feel encouraged. I need to feel it's OK to aim high, that my aspirations should not be curtailed because of my disability. In the next session I shall explain more specifically the barriers to aspiration that I've encountered but I want to end this morning session on a high note by explaining the most recent pivotal point. Before I do I should like to emphasize the points I have been trying to make: parents need to be working in partnership with advisors, kids need choices and acceptance.

I dreamed of going round the world on an ambitious adventure if I won a website prize and had to travel to Australia to collect it. I had it all planned out where I wanted to go, what I wanted to see and learn about, how to organise it so it was doable. I just forgot one little thing - the cost. When the chance of making it come true arose and my mother worked out the cost of my plan, I didn't know whether to die of shame or disappointment. �12,000? It seemed a crazily large sum. But there were 2 carers besides myself, the hire of vehicles large enough for all my specialist luggage. My mother didn't bat an eyelid. She, the woman who gets sick even travelling in elevators, who hates everything about travelling and could have just copped out merely said "it's going to be tough raising that in such a limited time" what? good heavens! she thinks it's possible! sponsorship? let's get going. I made something really huge happen with my journey around the world. Anything seems possible now. I am limited by my imagination, I will not be limited by my disability. I can and will lead a useful life.

This morning I rabbited on interminably about memories to do with self-expression and education, acceptance and empowerment. This afternoon I'm wanting to illustrate the problem of attitude, the denial of my equality with able-bodied people. Until decision-makers understand and eliminate basic discriminatory attitudes there will not be an all-pervasive change through society. Most people obey the law. Most people did not wear seat-belts till they had to. I think life for me won't change until the law is at least as strong as it is in sex and racial discrimination.

Let's begin at the beginning. From diagnosis at 13 months through to adulthood at 18 years, I have to periodically attend my local paediatric centre. It's where the speech therapists, physios and OTs are based. It houses a couple of pre-school groups. It's where I see my consultant orthopaedic man, my general consultant paediatrician and my epilepsy and neurology consultants. There is no parking. The reception and waiting room are on the first floor. There is no lift. There is a sign in the hall saying no valuables should be left lying about. My mother has to leave me in the hall and go upstairs to report that we have arrived. She has to persuade them that she cannot carry me upstairs and a downstairs room must be arranged. There are no examination couches downstairs. I have to be laid on the floor to have my hole in the heart listened to and my pelvis examined. The doctor must kneel on the floor. Then I must be lifted up again without the aid of any hoist. Then my mother is asked to pick me up and hold me in her arms to take a routine weighing on ordinary bathroom scales because they cannot bring the scales downstairs that I could sit on. There is no disabled toilet in the building. Now I wonder what I learn from all of this? Are the disabled valued? Of course not, I'm a bloody nuisance to everyone. Should my mother be lifting and carrying? Yes she should. Should anyone else? No there is health & safety legislation that prevents them from being allowed to.

I swopped GPs. It became unacceptable to attend a surgery where the GP wanted me to be sent away from home, where the GP wanted my mother sterilised "so it couldn't happen again", where he talked openly about how he couldn't handle disability and "didn't like" disabled people.

I have no access to a wc, basin, shower, bath, lift or hoist at home, although we've been in the system for 7+ years. They assess me as having complex needs. If I required a simple bath seat, screwed into the floor to rotate and lower me in, if I required a mobile hoist, these sorts of things would be provided free of charge. "They" have decided I need ceiling hoists and stuff that is not free. They have decided I cannot have it a bit at a time. And I cannot have something now and dip into the pot of resources again later. They have decided there must be a once and for all solution. After 5 years I complained to the ombudsman. His verdict? There had been no unnecessary delay or maladministration because it was correct for the Council to take its time before spending public money. I can think of several rude things to say. But I cannot anyway see why parents of a severely and complexly disabled child have to contribute to the horrendous cost of necessary equipment while those of a more mildly disabled child have stuff provided free. I think my parents have enough to contend with emotionally, physically and financially without this added burden.

I fall between all available stools. There are budgets here and budgets there, regulations here there and everywhere. I undoubtedly have needs but are my assessed/acknowledged needs met? Often they are not. After the Ombudsman's ruling against Social Services (a different complaint), a care plan was put in place to support me at home, a most useful and necessary thing since my mother had twice been ill with clinical exhaustion for months, and, remember, I was not going to school. In fact my statement when it was eventually issued named "education otherwise than at school". This care plan is now fast being eroded and the help mum was getting with me has dwindled because of their not being aids and adaptations at home. Health and safety legislation does not allow me to be lifted except by my parents or my brother. The physio department has yet to decide how I can continue to use a standing frame. Education have not even begun to contemplate the problem.

Of course if I was to buzz off to an institution, my parents would incur no cost and I could be craned about all day long. Unfortunately it would not suit. Not merely do I vociferously object to being segregated and kept out of mainstream society and all that I am doing but possibly luckily for me, given how my opinion counts for nought and my parents' too, the Health professionals unite to point out that I am at risk in an environment where people are used to other sorts of disability and I am not cared for exclusively by those trained specifically in my care. Such is the dubious advantage of being uniquely disabled.

Another problem that has arisen is with my wheelchair. The service will no longer provide a chair similar to my present one, which I have outgrown. They know that I am dependent upon its multi-positioning feature both to make me comfortable when I have a myoclonic seizure and in order to change my nappy in a disabled toilet. Not their responsibility. They have a duty to fund only a chair for basic posture and mobility and would prefer to issue one that cannot be used rather than fund one that can but is slightly more expensive. They said to go to Social Services for part-funding. I approached my care manager, carefully explaining the options viz: go out but don't change and get wetter and smellier all the time, 2. get catheterised for non-medical reasons in order to save the budget of another part of the NHS. However, neither of these solve the problem of poo. You can bet if I go out, I'll need to poo. Why is that? Dunno, but I'm sure it happens to the able-bodied too. Especially if you lead a busy life. One is not always at home at the right time. That leaves the option of staying at home feeling trapped (an entirely unrealistic option, thank you) or of going out and somehow finding enough space in a disabled toilet to be lifted out onto the floor and lie there where it is wet and unhygienic awkward and physically taxing and, of course, impossible for a paid carer. Social Services refused to help.

Not only that but I received a letter from my care manager telling me that my and my mum's expectations were unreasonably high and that the statutory agencies individually or severally could not meet them. If I want a wheelchair that enables me to leave the house and enables me to be managed by someone other than a family member (that is a wheelchair that would allow me access to resources named in my statement) it must be funded by my family. Fortunately I have persuaded my OT, my GP and my consultant paediatrician to look into this matter and they are now trying to establish my clinical need for another chair like my present one, but they also have to find a mechanism for meeting that need. It all takes meeting after meeting, day after day, month after month. Often I have to be re-measured or re-assessed in case I have changed while these processes go on. The wheelchair is but one example.

My physical care is time-consuming but is as nothing compared with the time spent trying to organise stuffs for me. I seem to be divided into a million pieces and boundaries are fiercely defended. Budgets are not for spending but for protecting. I am made to feel greedy. I am made to feel difficult. I am made to feel worthless. I am 13. My considerable achievements are not apparently valued by my community although I receive correspondence from all over the world from people who do seem to value me and exhort me to struggle on. Life is a struggle. Not merely because I don't have proper equipment, bathrooms, intellectual stimulation, the company of my peers (however one defines that), not merely because of my disability. Life is a struggle because I am so afraid. I am afraid of my dependence on services whose attitude impedes me, hurts me, frustrates me, and upon which I am life-long dependent. Who will help me when my mum dies? Who will be my advocate? The NHS resources a clinical psychologist to help me with my fears but it's not an individual's problem really. It's not me that's mad, it's society that's unfair. And I find it sad that although I may be sufficiently cute crip to be a human interest story in the press, I can't kick them into campaign mode single-handed. I don't really want to spend my life in politics fighting for my rights or those of others. There are other things I want to do, but if I am prevented from doing them, I have no choice but to be a political animal.

I demand the right to live life to the full. I provide a number of challenges to the statutory agencies in consequence, and despise and fear the power they have over me. They dominate my life too often determining what I can be and making choices for me that are neither inclusive nor individuated and which unfairly limit my aspirations. Life is a struggle made bearable by:

(1) being given choice, feeling empowered and responded to;

(2) having allies amongst professionals, who work in partnership with me and my parents;

(3) a stupid optimism that things will come out all right in the end if I do my best and that most people are basically nice;

(4) a belief in collective action and the power of individuals to effect societal change.