I have written the following draft for a German teenage magazine. The themes are the old familiar ones:

OK, Reader, I am 12, British and have a duff body ie cute enough but physically challenged - I cannot talk, gesture, change position, walk, stuff you probably take for granted. I do not attend any school (even though I ought to) because bureaucracy has seriously f-up my life. I am determined always to be busy and self-determining though, my future is not within an institution, is not I hope going to be one of dependence on state handouts.

I've been asked to write about a week in my life so here we go:

I had a slight fever and a great deal of violent shivering and had to cancel an appointment with an educational psychologist (goodeeeee) and my regular hydrotherapy session. I spent both am and pm waiting at the doctors' so that my mother could once again ask why? It is my 13th bout of fever since June. There ensued a lot of tedious talk around my bowel movements. I drifted off into faraway realms of my imagination listening to the music, toying with the music that gurgles and surges within me. I was resourced for several years to write out the classical stuff that I compose within my head and I have completed scores for an orchestrated ballet and about a dozen smaller scale works too. I used to study at a enormously prestigious London music college and attended classes with undergraduates when I was still only 8 years old.

I spend the early part of the morning responding to my mail and e-mail. I have a very friendly letter from Ted Simon, a writer who spent 4 years riding around the world on a motorbike. He is offering me an article for my webzine FROM THE WINDOW which I set up over a year ago in the hopes that it would put me in touch with a lot of interesting people, for at the time I was both lonely and extremely (clinically) depressed. I am preparing my 5th edition. The British astronaut Helen Sharman has promised me a Guest Column. Previous guests have been John Tavener the composer (eg of the sacred music that accompanied Princess Di's coffin from the Abbey), the head of the Anglican Church the Archbishop of Canterbury, and Kofi Annan. I wrote to Superman but got no reply.

Today I also went horse-riding on the hills outside my hometown as I have each week for 10 years. It was a dripping misty morning, quite cold, quite drear. I was irritated by my mother enjoying it a great deal - the horrid weather I mean. We travel north as often as we can (5 times this year) to spend time in the wilds of Scotland. There I relish misty mystery days where ravens clack from invisible boulder and seals slither from solid rock to silver grey deeps with scarce a ripple such is their blubberful balletic poise. I find the greys soothing for my troubled spirit, I find the wind whispers fragrant songs for me. There not here. This is England, blaring, uncalm, crowded, unwild, mundane, unjoyous. Why does she think this mist fun?

I had a very important but boring day sitting from 10 till 4 at a meeting between me, my parents and an investigator from the Ombudsman's office. They are looking into why my local council are not providing me with any education as the state requires. It is a legal thing, deciding if I am, as for 4 years in my past, the victim of an injustice and what can be done to remedy it if so. It is not a court just a meeting in our kitchen at the long oak table with my mother cross-examined and producing papers to support what she is saying. The investigator also inspects the Council files and meets with officers of the Council. Then a report is drafted for comment and after they've considered our comments, they issue a final public report. Last time I got a written apology, token financial compensation and a written promise that they would deliver what had been agreed in June 1996.

I was late for my next appointment which was a trial of a new dining chair which provides me with very correct postural support so that I grow with a straight spine and pelvis. The rep brings it to my home for me to try out. It is very hard to lift me into it but comfortable once I am in. The occupational therapist I have known since I was a baby has to find the funding for it. It will be paid for by the NHS (Health service) but they have a limited budget each year and regulations about who gets what. It is after 6 before the rep drives her 2 hour journey home. I pop into the "playroom" and watch tv.

Today I have the producer of BBC TV's Video Nation coming for the day. They have supplied me with a camera so that I can film aspects of my life and it is all archived in a national archive. Some of the material they cut into short films for broadcasting. They have 50 people around the country of all ages and occupations doing stuff for them, for a year or so each.

Chris reports that she likes our film of my first canoeing trip (in the Scottish Hebrides) and wants to cut (edit) it into a "short". She comes to hydrotherapy with me, my mother and my care assistant and films me exercising in glorious warm water, feeling freed from the unyielding weight of my body, stretching, twisting, pretending I am a dolphin, a ballet dancer, a mermaid, a being of some other sort, not helpless, not static, not disabled. I add some commentary, and later I also film some stuff about my recently deceased Gran and people's attitudes to her death - relatives had not visited for years because she had Alzheimer's and they assumed she was unhappy which she wasn't, and they assumed she didn't recognise anything or anyone when she took great delight in us her immediate family, even though she couldn't converse and she was frequently very confused. She always loved sitting in the garden, and she loved eating meals with us (though we had to be careful what she ate as her chewing got so bad), she tried to dance with me when I exercised in my standing frame, and played ball gently with my brother. She lived in a "home" with her own room and furniture with care on hand and communal sitting and dining areas and she liked the company that she had there. She had been very scared living alone after Grandpa died.

I was cross on waking to discover Mum had a migraine since I was dependent on her for my day to pan out nicely. However she took a tablet and got better if somewhat drugged. She seems fine when she says she feels drugged so I don't bother too much. I went with her to see my psychologist. He is helping me to explore my feelings and how to cope with the rage I feel as a result of the injustice I am subjected to and the depression I too easily fall into because people find me difficult to accept. He is an amiable American who seems to understand & sympathise and who offers concrete suggestions on how to deal with particular situations I find difficult. He also writes to the Council about how they are harming me.

I rush home for a bite to eat and then am driven by mum up to London to visit friends. I only have a couple of hours there and it's oh 3+ hours of travelling but it's wonderful to see Chris in his new flat. He has recently moved in with his girlfriend, a big step emotionally after years of sharing with mere friends. He is a software engineer and we talk computers for a while and I explain what I've been doing with my website (he's my technical back-up man) and then he shows me his art (he's fine at life drawing), his flat (horrid small basement, I think) and we eat cream buns when Toni comes in from shopping. Then he tries on his costume, for when I leave he is off to a fancy dress "murder" party. He is totally ridiculous dressed as a tarty princess and I cannot imagine what the people travelling alongside him on the underground will think. Maybe the London Underground is full of such things on a Saturday night.

When I get home, I share an Indian take-away with my family - yum! but I am also running a fever of over 100� F - my UTI (urinary tract infection) or whatever it is has broken through my antibiotic cover.

My godfather telephoned but I didn't speak with him, Mum took the call. I don't always find telephones easy. At home I have a specially converted speakerphone but mostly I corresponded or meet with folk. John my godfather is a man I got to know through writing to him. We share a sense of spirit and he understands my music dinning inside me, indeed he helped me to get started writing it down, he has longed for me to be accepted into the Orthodox Church and I was, at a special service conducted by His Eminence the Archbishop Gregorios of Thyateira and Great Britain earlier in the year at which John, by way of surprise, wrote me a special song and arranged for an opera singer to sing it at the end of the service. John is patron of my webzine FROM THE WINDOW and eminent. Otherwise a very quiet day recovering from my fever.

A journalist from the national monthly newspaper Disability Now came to interview me for a full page feature. I had a lovely time chatting to her about her own life - she walked across Tanzania last summer, which she has since written down for me for FROM THE WINDOW, (see the 5th Edition). However the day was dominated by a more exciting bit of news: I am a winner (or my website is) in the Cable & Wireless/Childnet International 1999 Awards - the first competition I have ever entered of any sort - and I have to journey to Sydney, Australia for the prize-giving ceremony in February. Wow! wow! wow! I am so excited, I am so very excited.

• FROM THE WINDOW can be found at www.rmplc.co.uk/eduweb/sites/hojoy
• The Cable& Wireless/Childnet International Awards can be found at www.childnet-int.org/awards/1999/shortlist
• you can write to me at hojoy@herojoynightingale.me.uk
• I have worked through December to raise sponsorship for an extended trip around the world - I am visiting international schools in Moshi (Tanzania), Dhaka (Bangladesh) and New York (USA) for a week in each as well as having a fortnight in Oz. I will be back by March 10th, well feasted, chocka with new ideas.

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