18 January 1999
I am too excited for words. I am shrieking out my laughter loud and hysterically for mony a long hour because I have made something huge happen. I have been shortlisted for a prize for my website and have to travel to Sydney (!) to collect said gift of cash.
Let me first tell you that this is a competition held annually for educational sort of stuff on the web that involves the participation of children. I was told of it when my website was reviewed in The Independent last August and since the application form posed no particular difficulties for me, I zapped off my entry in time for the closing date in October and held my breath. I have never ever ever entered any competition before, of any sort. I am not at all in favour of such stuffs. I have no personality for such stuffs eg in the field of music where I have seen it go on. But I did want to win a trip to Australia and dreamed my way round other places en route. I even told my friends in Mull that I may not be able to see them at half-term in February because I had entered a competition. I got a lot of laughs. My brother said I was mad even contemplating winning - he is very unimpressed by my achievements because my webzine is so boring and un-graphic.
I gave up all hopes and got on with being miserable and despondent as life carried on being unfair. Then mum came grinning into the room one morning - a strange expression for a woman who had left to go to the toilet - and told me that the phone call that had just come in was from the competition organisers to say I was a winner. I just felt quite ridiculously happy and carried on dreaming. My mother tried to find out costs of round-the-world tickets. The organisers were paying the cheap fare on a direct route and 4 nights bed & breakfast accommodation but were offering cash towards our trip to the tune of the flight cost if we went an alternative way and in addition were paying for an extra carer because of my disability. By then we were running up to Christmas. I started thinking about Christmas presents.
I got a jolt when mum told me the costs of my trip - about �12 - �13,000 for a 5 week round the world trip. What? That was just not going to happen. I would have to give up my dreams. But my mother is not an ordinary woman. When I needed to escape nappies as a 2 year old but the Health Service could find no commode for me to use because of my unique disability, my mother designed a 2 piece pack-flat toilet seat that would fit on any standard loo seat and organised for the local hospital to make some in acrylic so that we had one at nursery, one at Granny's, one in the upstairs bathroom, one in the down and one in the going-out bag. She's also designed me a welly-boot wheelchair and built me a special bed. She is elected Chair of a respected Kent charity and has raised money for them to pay salaries to 4 advocates. She is a very positive person. I am used to running her down because she is my mum and she has no skills whatsoever in music maths or languages and was spiritually unaware of realities too. I don't like her doing things for me because I'd rather do things myself and I don't like sharing tasks because then people think the adult has done everything intelligent and my contribution is overlooked or somehow diminished. However, there are times when she is A Very Nice Mother. This was one of them. She did not say it can't be done. She did not say it shouldn't be done. She didn't say I was a jumped up brat with too big ideas. She said it would be difficult. So I sort of raced into a higher gear and egged her on. A list was made of firms who supply foodstuffs and so on to us and some of the big british companies which came rolling off the top of our heads. I wrote a begging letter and made up a proposal and costing. I put together the papers I wanted to enclose with it such as my cv. This took some time because I had to think out exactly what was required. stuff went off in the post. Christmas arrived with only �250 come back from a very nice jam producer. New Year went by. Panic set in. I had set my heart on something that wasn't going to happen. I sent off a few more salvos. Lots of refusals came in, personal letters with words of encouragement but no dosh. More letters going out. And then quite surprisingly a few things came in and the amounts were generous, wow! o wow! this trip is going to go go go! The last week has been a flurry of confirming our accommodation before confirming flights, getting jabbed, finding out about visas, car hire, disabled access, piles and piles of telephone calls and e-mails. I leave next week! I am going to visit 4 continents. I have made something very huge happen.
I enclose below My Very Big Proposal. I will report in later columns how it all went in reality.
REALLY ROUND THE WORLD
OUTLINE
BACKGROUND
THE TRIP I AM WANTING TO MAKE
I dislike, and find difficult, holidays. I do not like being a tourist and I do not like staying in towns etc where I know nobody. This is entirely because of my personality. I am sure that it is possible to travel from hotel to hotel without encountering insurmountable problems because of my disability but it is not comfortable and not socially intellectually and emotionally stimulating. I want to stay with families so that I can converse and learn something about life in the places that I am visiting.
I am finding families through the ECIS international schools network, because my father is connected to ECIS via his work as Pro Vice Chancellor of the University of Kent at Canterbury (UKC), England. A week or ten days can be arranged in each of Tanzania, Bangladesh and New York, with my time in Sydney spent with my e-pal Kath, a wild and wonderful Ozzie journalist with one arm and one leg (she was just born like that). One cannot plan the experiences along the way but I don't want to pack in all the sightseeing things, I want to drink of the habitat and come back enriched by things both ordinary and most special. In particular, I want to ensure I have enough quiet time to feast gently, unhurriedly of smells and sounds and vastnesses, the sky and tone and climate.
My preoccupations are with art. I have fallen rather peculiarly into journalism, having set up my webzine FROM THE WINDOW to draw me out of depression when my composition places at the Royal Academy of Music and Royal College of Music in London fell apart. I had been studying at the RAM alongside the undergraduates on a specially created part-time place when I was only 9 and I thought it would last forever. I thought I had found my home amongst my peers. I was thrust from my mainstream primary school when I was only 6 because my Education Authority were advised that I needed a tutor and a grammar school base, such was my giftedness. Local schools did not want such individuality and I have remained school-less ever since. At the Academy I found friends, a niche, I was a right little pickle skippitying enthusiastically everywhere, oblivious of their growing unwillingness to make allowances for my disability. I was devastated when they suddenly abruptly unceremoniously ejected me and I found them all to be fair not foul weather friends. I fell into a trough of lonely and helpless despair and could not buoy myself back into joyous anywhere. I could not even with clinical help from a Centre of Excellence. Then I got internet... (I sound like an advertisement but nay nay listen). I found other disabled people to correspond with & hid my age for quite a while before venturing "out" as me again. I set up FROM THE WINDOW to get back in touch with the world, to rediscover the wonderful things that I love about life, and it's been great fun working on it, even the disappointments are OK.
I gather articles from the far-flung the famous and those that I meet or are known to me. I have had some notable successes - articles from eminent persons such as John Tavener, the composer of sacred music, George Carey, Archbishop of Canterbury, Kofi Annan, Secretary General of the United Nations, Margaret Atwood, the novelist and poet, and Helen Sharman, the astronaut. Most articles are more mundane, but I have had very little success at getting school-aged children gathering oral histories for me, and I am also disappointed how many interesting adults claim to be unable to write considered prose. I am therefore instituting a new column for interviews that I carry out and subsequently write up myself. Hitherto articles have always been 1st person accounts.
The journalism thing has taken off a bit. I have been asked to write for a German teenage magazine and for the Sunday Telegraph in the UK. I have also been made into a BBC Video Nation correspondent, and have been featured in Belgian, New Zealand and Dutch webspreaders as well as in the national disability newspaper in the UK and a review in the Independent. It's all a side issue. The real stuff is art, whether that be writing or music or ballet or installation sculptures. I feel I belong in the world artists inhabit, I feel I need to bellow forth my emotions hued into sturdy symphonic form, I need to create spaces that are gently singing their silence via proportion and tone, I need to travel in quiet places and listen to the wind and the hums of the sun on stone, ocean on shore etc, I need to feast from the traditions of cultures not mine, not at all mine but with music and dance rooted in other soundbases, I need to let my spirit soar within the temples of other spirits, and I need time to digest when I get home the multitudinous realities gathered up and treasured away.
I want my trip to be thoroughly practicable. I don't want my mother tired out and stressed beyond her capabilities. I want to experience a wide range of things. Life with a family will mean I don't have to eat out all the time (which would be very stressful for us, apart from expensive). Sometimes it's easier to ask for a sandwich or a boiled egg or something simple. It is certainly more interesting to see how others live, to participate in shopping, even to watch tv and flop for a few hours, with people who are leading other lives. I hope that my hosts would help me to make a few trips out and facilitate my seeing some of the things I want to see. I hope that my host families would find me always courteous and willing to fit in, would not feel too out of pocket. I hope that the schools involved in helping to organise my trip would feel that they could benefit from my visit in some way. I certainly hope that I project a positive view of disability and am happy to be involved in any discussions that such issues provoke, or to discuss my mag and website, life in England etc.
The artist within me yearns to hear the sounds of an African night and hear trampling of undergrowth as elephants amble on. I long to see the huge beasts en famille, close by and in the wild. Hear their breath. I long to feel shimmering dessicated heat, humming raw heat, and feel drums beating through the earth. Tanzania. I want to talk to different people in different walks of life (eg the school cook, caretaker, headmaster, 6th formers, parents) to get a multi-faceted perspective on the very same place, its past, their past, their connections and their diverging paths. I want to take a train trip out of the city, 2nd class, to see villagers, I want to see the river and the fields, hear live classical Indian music and/or dance. I want to be hurt by poverty and appreciate my own affluence. Bangladesh. I want to hear opera in Sydney Opera House, take mum to the beach, have a suburban barbecue (maybe with relos), see budgerigars flying wild, meet Kath's family and friends. Sydney & Oz. Feel chasms of cold in chill New York, visit the UN, an ice hockey game, the Guggenheim, sit in a steamy cafe happy and replete, with new-found friends across the world to look forward to welcoming on visits to the UK or just to keep in touch with.
I start naive and hopelessly optimistic, overinfluenced by romantic media images. By the end I hope to have replaced these with a very sturdy reality distilled from being a welcomed guest not a voyeuristic tourist, from conversations with people who have elsewhere and different lives, from a simmering of imagination that will in time throw out a wealth of product fed noisily by this experience.
COSTS
for a 5 week trip
flights, excursion rate....................................................................�2796 per person
expenses for internal travel and food............................................ ?
(say �1750 per person for 5 weeks, ie �50 per day)
there will be no accommodation costs
total................................................................................................�4500 per person
I have a tiny amount (�1500) in my bank account that I am prepared to spend. It was awarded to me by the Local Government Ombudsman for my personal development as a token recompense for 4 years of injustice when Kent County Council refused to provide me with an education.
The competition sponsors will provide �2,400 plus accommodation for 4 nights B&B in a Sydney hotel. Sky TV are considering some sponsorship and covering the award ceremony. They want to feature me on an education programme about the use of the internet. I have had an anonymous donation of �2,500. Singapore Airlines have notified me that they will provide half price tickets, a deal worth about �1,300. Virgin Atlantic are providing free flights home from New York. I have some other donations too.
My shortfall is therefore under �3,000.
The costs are so high because I have to have 2 carers with me. One will be my mother, and the other a longstanding friend, because neither my father nor my brother can take time off.
REFERENCES
My LEA personal tutor in art, the sculptor, novelist and counter-tenor Peter Giles, Filmer House, Bridge, Canterbury CT4 5NB, telephone/fax 44/0 1227 830293
or
Wendy Clarke, Head of Paediatric Occupational Therapy, Canterbury & Thanet Community Healthcare Trust, The Mary Sheridan Centre, Old Dover Road, Canterbury (who has known me for 11 years), telephone 44/0 1227 783043.
HOW TO CONTACT ME AND/OR MY FATHER
snail: 3 Sandbank Cottages, St Stephen's Hill, Canterbury, Kent CT2 7AU, UK
fax: 44 1227 824026
telephone: home 44 1227 456625
father's work 44 1227 823350 (direct line)
e-mail: hojoy@herojoynightingale.me.uk
website: www.rmplc.co.uk/eduweb/sites/hojoy
My father is David Nightingale. He is Pro-Vice-Chancellor at the University of Kent at Canterbury.
Hero Joy Nightingale, 12 January 1998
dob 26.8.86
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