born 26th August 1986 in Canterbury, Kent, England, 2nd child of Oxford graduates Pauline Reid (Chair of Action Support for the Special Needs Child) and David Nightingale (lecturer in classics and now also Pro Vice Chancellor, at the University of Kent at Canterbury).

At 1, identified as having an unknown neurodevelopmental problem resulting in physical disability profound enough to be described by the consultant paediatrician as a locked-in syndrome, characterised by profound apraxia of all muscles that leaves me unable to speak, vocalise, gesture, change position, or look after myself. I subsequently begin working with physiotherapy, occupational therapy and speech therapy services at the Mary Sheridan Centre in Canterbury. In addition I have a VSD (hole in the heart).

pre-school: I attended Canterbury Day Nursery and mainstream playgroup, and enjoyed being helped to make choices so that I could direct my own playtime. I became habituated to relying on hands-on help which was seen as necessary after all other ways of teaching me more independent control failed.

At 4 I had started to read and write and spell and was no longer dependent upon objects or pictures in order to communicate need and wishes, and was no longer dependent solely upon my mother's facilitation of my spelling, having my own assistant at nursery who utilised the same techniques.

At 5/6: I attended St Stephen's County Primary School from November 1991 until February 1993 when my assistant left and my school felt unable to cope with my intellect. My Statement of Special Educational Needs issued by Kent LEA says:

The LEA have never been able to find me a school place since that time, and have resourced nothing academic.

At 6,7,8: From June 1993 until June 1995 I worked with an amanuensis supplied by Kent Music School and funded by Kent LEA on Tuesdays, Wednesdays and Thursdays for a total of 20 hours per week, writing out the music surging in my head. And during 1995-6 I worked with my mother as amanuensis.

From September 1994 until June 1996 I attended the Royal College of Music Junior Department on Saturdays, again at LEA expense.

Around this time I developed daily myoclonic epileptic fits, which have over the years been linked to stress and fear and frustration in their incidence but which I may grow out of as I now get very many fewer.

At 8,9: From April 1995 until April 1996 I attended the Royal Academy of Music as an Intermediate student ie I attended on a Friday having access to Library, canteen, individual tutorials, rehearsals and concerts, undergraduate workshops and classes (the undergrads are called "seniors") and the undergraduate festival and performances. The LEA footed the bill.

I produced the following completed musical works during this period:

1. Song of Faith

During this time, I was the subject of a lengthy feature in a small-scale publication called Kalavati which is the journal of a society of Sub-continent musicians.

In January 1995 I complained to the Local Government Ombudsman about my lack of care, education and adaptations. In July 1997 he upheld the first two of these complaints asserting that I had been the victim of maladministration causing me injustice for 4 years. Kent County Council accepted this ruling in September 1997.

At 10/11: I was much depressed (clinically) by my rejection by the London Colleges, but re-built myself on being supplied with internet facilities by my LEA. Since June 1997 I have been setting up and running my own magazine "FROM THE WINDOW" on the internet. It is a journal of poetry, travelogues and experiential writing published at the moment approximately quarterly. The website is at:

www.rmplc.co.uk/eduweb/sites/hojoy

The concept and design is my own and the organisation of its content. My connection to the internet is funded by my LEA. The IT was initially done by a staff member of Canterbury Christ Church College, and then by an IT software designer working in a private capacity as a friend until I obtained appropriate software. Now I work in conjunction with my mother on it. The LEA withdrew their support for my IT work in February 1998 when the computer they had previously supplied broke.

The patron of my webzine is John Tavener the contemporary composer shot to greater prominence by one of his pieces being played at the funeral of Princess Diana but a man I have used as a mentor since writing to him when I was 6 and who became my godfather in September 1998 when I was received into the Orthodox Church in a private service conducted by His Eminence The Archbishop Gregorios of Thyateira and Great Britain.

I have solicited articles from friends, the famous and the far-flung. My more famous acceptances have been from Melvyn Bragg, Margaret Atwood, James Macmillan, Kofi Annan, George Carey and Helen Sharman.

Here are some comments I have received

I am not wholly sure where my magazine has been reviewed but to my certain knowledge it was featured in the Dutch "Daily Planet" which led to a great surge of interest in it in all the Low Countries, and also in The Independent, where it received a most prominent and favourable review in their weekly 1/4-page website feature. FROM THE WINDOW was described as being a

Earlier in the year I was invited to become a correspondent for BBC Video Nation. I accepted and received my training and have sent in the first material to them. They particularly like the film of my first canoeing trip and hope to cut a short from it, and also from the material on the death of my grandmother from Alzheimer's.

I also am fortunate in having friends who invite me to attend rehearsals of exceptionally high-calibre music and meet with musicians and performers and administrators, in particular, at the Royal Ballet, the Philharmonia Orchestra, Glyndebourne Opera and English National Opera.

During the year I spent some days in Bristol with my long-time friend Sarah-Louise Young and attended rehearsals at the drama department and gave a seminar to the music students in the presence of the Head of Department.

I also directed the taking of some black and white photographs which could be termed still lifes and participated in their development and enlargement in the darkroom, which experience highlighted the problems and frustrations of collaborative working.

I was invited to make a public speech to the DfEE (Government Department of Education and Employment) by the special needs organisation IPSEA and took part in a public placard-waving demonstration that reached the front page of the national monthly Disability Now. I also made a written submission to the House of Commons Education Committee Inquiry into highly able children, which was published in the final report Easter 1999.

My LEA tried to send me to a residential special school for kids up to the age of 15 where many of the pupils have intellectual and/or sensory impairments as well as physical disabilities, after 5 years of unjustly ignoring my education. (Another year went by in spite of the Ombudsman's ruling.) Many people who know me - professionals, including the eminent consultant paediatrician who has known me since birth, my GP, my long-time occupational therapist, my former enabler, my LEA tutors, my former musical amanuensis, the Head of the Music Department at Canterbury Christ Church College, my 3 family support workers supplied by Social Services, my clinical psychologist, the director of the LEA's Parent Partnership service, and friends, including the senior consultant of the Computability Centre, the then Artistic Administrator of Glyndebourne Opera, an eminent composer, an opera director, a professional singer, a professional percussionist, a special needs teacher, a university mathematician, a young artist, a young actor and playwright, and a software engineer - wrote to protest. The LEA withdrew their proposal, but not before I was thoroughly miserable with terror.

At 12: I continue to ride weekly in term-time (as I have done since around my second birthday) with the Riding for the Disabled Association (RDA), and workout twice a week in a hydrotherapy pool.

I started the year by seeking to learn more about my future trade by grasping the opportunity offered by the students and graduates of Bristol University Drama and Music Departments to stage commercial performances of my work. I continued to try to plan an art exhibition of my installations and placetics. I pasted up an editor's homesite on my website and some diary pages.

In October 1998, the Sunday Times ran a feature on me under the headline "Disabled prodigy denied schooling". It met with no favourable response from the LEA. Battle still ensued. My parents still agitate for my Statement of SEN signed on June 14th, 1996 to be implemented as the law requires.

I was interviewed for a whole page profile feature in the national monthly Disability Now and that appeared in January 1999.

On November 30th, all current projects were laid aside when I got news that my website was a winner in the Cable and Wireless Childnet International Awards for 1999 and I was expected to travel to Sydney, Australia to collect my cash prize on February 18th, 1999. The air fare was offered for me plus 2 carers plus 4 nights b&b in a luxury hotel in Sydney.

My previous travelling had been limited to family holidays to Scotland, to Brussels, to Paris, and 3 times overland to Venice and Tuscany via the Alps. I have also visited family in Wales and Lancashire and stayed with friends in Bucks and Oxford. Although I have camped and caravanned, b&b'd and self-catered I didn't feel like a seasoned traveller at all and had only been in a plane once, to Inverness to attend my grandpa's funeral. Holidays bore me, even though I am excited by the prospect of visiting new places. I preferred the now regular visits to Mull in the Hebrides, usually at half-term both winter and summer, making my 10th visit this year since 1995.

But now the prospect loomed of something altogether huger: I sought sponsorship in order to travel round the world via some homestays in 4 continents using the ECIS international schools network. I obtained my goal of �12,000 and my friend Tom got time off his Masters in Art to accompany mum and myself on a 5 � week journey to Tanzania, Bangladesh, Australia and New York.

Mum drove us down from Nairobi in a journey that took 15 instead of 5 hours because of car probs. I went into classes as a visiting resource on disability (in many cases being the first disabled person they'd ever met), visited the local shops and market, a local "Asian" family (settled in Tanzania since 1911), and a centre for 70 homeless street boys, besides staying at Tarangire Tented Game Lodge for 2 nights in order that I might venture amongst elephants - a task successfully accomplished without either a guide or binoculars (which I cannot use).

the staff member Kim Krekel who had taken charge of organising my stay in a truly efficient and empowering manner took my wishes very seriously and in consequence I visited the Centre for Diarrhoeal Research (otherwise known as the Cholera Hospital) and its associated Malnutrition Rehabilitation Centre; had a superb evening of classical Bengali music and dance put on just for me by eminent professional artists (highlight the sarod player, internationally renowned and an instrument I have longed to hear for a long time because of its sympathetic strings); attended classes at AIS to take questions on disability and also the English School in Dhaka where they staged a concert for me; went an all day boat trip on the Tongi river through rural Bangladesh in the company of off duty UNICEF workers; visited someone who works for the World Food Program; a British diplomat in charge of emigration who is embroiled often in cases where girls are imprisoned following a failed attempt at forced marriage; an agricultural scientist and missionary who works for Ernest Borlaug, the Nobel Peace Prizewinner; the British, Canadian and American Clubs; a top photographic gallery; an inspirational centre for the rehabilitation of those unfortunate persons who break their necks or backs which warrants a book or a lengthy documentary on just it and its founder, the dear dear Valerie, possibly the person I admire the most in all the world.

It was here that I met Sheik Golan Mustapha who broke his neck on 21st January falling from a coconut tree and Abdull Gafal who broke his in a baby-taxi accident (most are the result of carrying too heavy a load on the head and stumbling, and they used to die of their pressure sores before Val came along and changed things, getting them up and learning new skills and back to their villages and into employment), and Sultana aged 12 whose TB had destroyed her spinal cord and whose parents had recently both died, and Lovely aged 13 who earns enough painting by mouth to pay for the carer she needs since breaking her neck 4 years ago falling out a 3rd floor window in the course of her employment as a child laundry labourer, and Selim who had broken his back in a traffic accident 4 years ago but who now works as publications officer etc etc etc.

And I went to visit Mollie in her slum and meet 5 teenagers who had been rescued from toil and poverty 5 years ago by being given cameras to record their lives and the means to market their results by a remarkable politically conscious professional photographer who told tales of his own teenage years during the civil war/war of independence. And I went shopping and wandering the streets too which is where I met the only begger I encountered and of course I gave him something. How could I be wheeled by a man who rolls through the dust because he has legs even more buckled than mine? I am told the local shopkeepers look out for him (in a kindly way). Someone must see he's OK.

Actually after zooming the first morning to a closed rehearsal of the about-to-be-premiered-in-Australia Britten opera Billy Budd in the o-so-famous opera house (arranged by my friends at Glyndebourne Opera), I took ill with a fever and was hospitalised in Sydney Children's Hospital for 3 days on a drip, thereby missing my awards ceremony at the National Maritime Museum and all the social events for winners who had flown in from Ireland, Egypt, Missouri, Hawaii, South Africa, Wales, Australia, France and Japan.

My website took first prize in the Individual category, ie �1,500 cash. I didn't care on the night. I was peculiarly unconscious and unresponsive in hospital. I had blood taken, shit taken, I was catheterised, sounded out, poked in the ears, mouth prised wide. I had a thing attached to my foot to monitor my oxygen levels, I had a canula in my hand and was on a drip with extra potassium in it, I was in isolation.

Nellie and John had migrated (from factory work in Lancashire) with their young children in the 1960s and had mony a tale to tell of their life and times. We met their grown-up daughters and their daughters, all Australian of course, just as I am English but my mother is Scottish.... we caught a river cat down to the opera house to take photos not got earlier because of being ill, and fell into long conversations of which there is no time to tell here with complete strangers now friends, and spent a day at Bondi having fun, picnicing, paddling and watching surfers (well specks on the ocean wave), o and I met Oli who is a full time surfie who is really quite hunky if rather old with a lop-sided grin and bedraggled hair like my own

Kath had been down in Sydney for the awards ceremony but now welcomed me to her home with Gill on a 10 acre small holding. I met some other feminists and an aborigine woman and her daughter with Down's syndrome who were involved in the arts. We went a walk in the rain forest (leeches!) and drove the dirt roads and fords (mum at the wheel of course to avoid car sickness) before going to the coast for 2 nights to a resort for wheel-chair users that sported ramped swimming pool, clamp down taxi service, electric beds, hoists etc at a very remarkably low cost, discounted for us as friends of Kath.

But in consequence of my illness, Oz was not a cheerful interlude between Third World and serious discussions in NY but a real downer in down-underland, my mood tumbling unnervingly and erratically down each insect-biting interminable damp grey torrential hour. Bondi was the day of interlude, one sunny day at the beach. Otherwise I was a miserable unrelaxed child awash in diarrhoea for a fortnight, stumbling out of dynamism into a horrid reality, into uncomfortableness and stress that started to dismantle and unravel my achievements. I was glad to leave Australia behind, even though all Australians are nice, there were no bad experiences at all. But I think it was here that I parted company emotionally with Tom.

I visited the school and talked to quite a lot of staff members and a few students; shopped for gloves, hats, scarves etc; visited our hostess at work on the 18th floor of the Flat Iron building where she was a senior person in a publishing firm with responsibility for jacket design; attended a rehearsal (arranged by my friend Sarah Playfair, formerly at Glyndebourne) at the Metropolitan Opera House of Verdi's Rigoletto skipping the 2nd Act to meet one of James Levine's assistants who had been a child prodigy on the piano and Barenboim's only pupil. He asked to see me and gave me a tape of personal significance of Du Pre (who he had of course known); I visited the New York Police Department having a contact through a colleague of my dad's who is a beat sergent in the Bronx. He took me to meet a mounted policeman and the horses (I've been riding for nearly 11 years and love horses) and to meet a detective (on duty) in an office that could have been a 70s stage set. I visited the Guggenheim Museum and caught an exhibition of Picasso (my favourite artist); rode in a bus, a truly accessible bus (they all are); attended a church service in Harlem; spent a day on Staten Island as a guest of a truck driver.

I also had a 15 minute meeting with the Secretary General of the UN (just because I asked for it and he said he'd be delighted) at which I discussed my concern about clean safe water and how my journey had changed me from just a budding young artist of sorts to anxious to act.... I now must have not merely a busy and productive and useful working life producing original work in ballet, music, installation art, poetry, writing and film, but must somehow balance this with my need to feel that I am doing as much as I can possibly do to ensure that some of the basic inequities of the world are eradicated.

My self-imposed agenda is to agitate for adequate water supplies and drainage facilities in the poorest nations. It horrifies me that hard-working honest nice people can be living with electricity in their homes and access to free health services for the treatment of cholera and dysentery and without access to safe clean water. It upsets me that they want it and can't have it. It upsets me that we wind-surf, shop till we drop etc etc while this situation goes on. If there is not the will, the infrastructure, the taxation system, the wealth in wages to tackle this from inside the country, logic and humanity dictates that aid must be given so that it is achieved. It was a target for the UN through the 70s and 80s. It should be the target for the new millennium. It is far from being achieved. Victorians sorted it in the UK and we take it for granted. Australia was but recently settled and they take it for granted. It is absurd that so much depends upon luck, the luck of where one is born. I was not born more deserving than a kid in Moshi, but I take for granted a quite different standard of living and life expectancy.

It seems to me that I am just plain lucky to be living in a comfortable safe and affluent place like southern England. People who are poor are not bad and deserving of their poverty, are not oblivious of the possibilities, unaware of what they are lacking, and o boy worst of all of course it is very basic stuffs that they lack, it is necessities and not luxuries. It is quite simply unbearably not fair, not fair for me to squander my life away on trivial pursuits rather than work for the greater good. It seems often to be the case that a service exists merely because a dedicated person from a foreign country made it their life's work to provide it, and that is very much better than nothing at all and it is very inspirational to see services in the hands of committed and caring people. The development of such services is as much an act of creativity as a theatrical production or a sculpture. It's just that the product is not art but something else. I want to be part of that creativity. Mr Annan is egging me on to campaign and agitate vigorously, raise awareness of the problem etc..... I have a sense of responsibility, a sense that I must make myself useful, a sense that others must understand their responsibility too.

During my absence and since there has been various media and other interest in my life and the intervening months have been a learning curve on how to handle this. There have been features about me in: The Telegraph, The Guardian, The Kentish Gazette (3 times), The Times Educational Supplement, The Mail, Woman, and BBC Music Magazine in the UK, and The Australian, The Sydney Morning Herald, Canadian National Post, and newspapers in Dubai, Athens, Adelaide, Germany, as well as various online sites including a prominent feature in TIME digital. Various tv and radio producers periodically spring up and AP have been interviewing me for their wire. Sky tv covered the awards ceremony and were one of my sponsors. I was asked to send a written paper to the International Conference on Conflict Resolution in St Petersburg and SCOPE has asked me to speak at their annual conference, this year entitled "Working Together to Remove the Barriers".

Life has changed. Life goes on. I am trying to keep up with correspondence and my webzine publication (now with a readership from 92 countries), and digest and write up my journey and I am engaged also in producing graphic representations of it. The LEA has appointed a new manager for my case. It remains to be seen if that is a good thing.

I enclose brief comments from LEA documents:

My LEA personal tutor in art, the sculptor, novelist and counter-tenor Peter Giles, Filmer House, Bridge, Canterbury, Kent CT4 5NB,UK.

Tel/fax: 0/44 1227 830293. e-mail: petergiles@filmerhouse.freeserve.co.uk

Wendy Clarke, Head of Paediatric Occupational Therapy, Canterbury & Thanet Community Healthcare Trust, The Mary Sheridan Centre, 43 Old Dover Road, Canterbury, Kent UK, who has known me for nearly 12 years and helped to develop my means of communication.

tel: 0/44 1227 783043 fax: 0/44 1227 783149

My NHS funded clinical psychologist Ned Mueller, previously for 22 years a tenured professor of psychology at Boston University, latterly Head of Speciality for Children and Families, East Kent Community NHS Trust and Honorary Senior Lecturer at the University of Kent at Canterbury and Guy's and St Thomas's Hospital Medical School. Ned trained at Rutgers, Cornell, Harvard and the Tavistock, and is currently in semi-retirement. address: Via Rusconi,37, 22100 Como, Italy

tel/fax 00 39 031 264752 e-mail: NedMueller@email.msn.com 

My father David Nightingale, Pro Vice Chancellor, The University of Kent, Canterbury, Kent, UK

tel: 0/44 1227 823350 (day) 456625 (eve) fax: 0/44 1227 824026 e-mail: D.R.Nightingale@ukc.ac.uk

I can be contacted on e-mail at hojoy@herojoynightingale.me.uk

document entitled "How I Communicate"