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Hero Joy Nightingale resources on the Web

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NEW: Mailinglist: http://www.egroups.com/group/hojoy/

Hero is 12 and suffers from "locked-in syndrome", a profound apraxia caused by brain damage that renders her body useless and her voice mute. She is unlikely ever to be able to walk, feed or care for herself but, thanks to the dedicated efforts of her mother, Pauline Reid, Hero can communicate. When her daughter was four, Pauline devised a complicated system of hand gestures which equate to the alphabet.

By dictating to her mother, who types, Hero has created an Internet magazine, From the Window, which contains articles by such luminaries as George Carey, Melvyn Bragg, Margaret Atwood and Kofi Annan - all of whom she has cajoled into writing for her.

And she's a brilliant poet! http://atschool.eduweb.co.uk/hojoy/hojoy/hojoy.html

hoo be i a sma brash bairn
cripped into tripping mony
a unwheeshit bellow brayed
oot beyond beyond oot
frae i oot oot frae i
into the wondrous wind of fragrant song...

NEW: AP story at CNN

Great UK Telegraph feature (mirror); Disability Now interview; short Time magazine piece (mirror); short web profile; Pendle.net rewrite

Other media: hjcv

...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".

1986: born 26th August 1986 in Canterbury, Kent, England, to Oxford graduates Pauline Reid and David Nightingale (lecturer in classics and now also Pro Vice Chancellor, at the University of Kent at Canterbury) brother Alaric two years older
1987: identified as having locked-in syndrome: unable to speak, vocalise, gesture, change position, or look after myself. physiotherapy, occupational therapy and speech therapy.
1988: devastating recognition of own disability hjw
1989? Canterbury Day Nursery and mainstream playgroup
1990: starting to read and write and spell w/mother's and others' assistance
1991-93: St Stephen's County Primary School

1992: writes to composer John Tavener, leading to patronage
1993-95: writing music w/amanuensis supplied by Kent Music School for 20 hrs/wk
1994-96: Royal College of Music Junior Dept one day/wk
1994-98: many compositions performed [qv] including autobiographical ballet
1995-96: Royal Academy of Music as an Intermediate student; mother as music amanuensis.
1996: summer: awesome Hebrides "journey of the soul" inspires ballet hjw
1996? lengthy feature in a small-scale publication called Kalavati which is the journal of a society of Sub-continent musicians.
1997: officially acknowledged victim of maladministration
1997? clinically depressed by rejection by the London Colleges
1997: June: initiates webzine "FROM THE WINDOW", a journal of poetry, travelogues and experiential writing published approximately quarterly
1998: accepts invitation/ training to become correspondent for BBC Video Nation
1998: October Sunday Times feature "Disabled prodigy denied schooling"
1998: October. Dr Caroline Fraser: adult friend, physicist, died age 40
1999: world tour
1999: Honored at UN [notice]

Sources: hjcv

Parents: "My parents are ultra-respectable. My father is Pro Vice Chancellor of the local University. My mother does far too much voluntary work, latterly with women's groups and St John Ambulance, now with Action Support for the Special Needs Child, which is a local charity helping parents throughout Kent." hja

Living conditions: "...a home in a leafy suburb, sufficiently comfortable, sufficiently affluent, though not what I would call well-to-do..." hja "I live in Kent where it's perpetually noisy with traffic and clogged up with consumerism. Our home is a 200 year old semi-detached house built of red brick and kent peg tiled roof with too busy a road at the front droning cars most daytime weekdays, and a larger southfacing garden to the rear chock-a-block with fragrances and birdsong." hjw

Travels: "3 times visiting Venice" hja "the Hebrides in Scotland treading in my mother's childhood steps" hjw "...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." hjcv

Art: "I do not want my art to dwell as it has in the last few years upon depression, angst, teetering madness and horrid red & black rage." hja ""placetics", ie room-sized installations that have both inside and out and where a simple aesthetic is the theme" hjg music hjm

Writing: poem hjh

"My disability is not ordinary at all but apparently unique. It is described as a kind of locked-in condition characterised by a profound apraxia of all muscles, choreic movements and hypotonia, an unknown neurodevelopmental disorder of unknown aetiology. I also have a VSD (hole in the heart) and almost daily myoclonic epileptic fits." hjd

"I am a beached whale, whether prone or supine."

"I feel much better now I am both older and somehow fitter. My mum is looking at me quizzically for she thinks I was fitter when I was a scrawny 5 year old and my legs were much straighter than they are now - I grow more and more wheelchair shaped..."

"Cleanliness is important because I chew my hands quite a lot and also trail them along beside me like a small toddler touching every available surface in a way I can't control. ... I have retained infantile reflexes and that means I reach out even to dangerous things. I cannot resist touching things that are within reach but I cannot easily let go and I certainly can't if alarmed." hjdiary

"...my daft idiosyncratic way of spelling out what I am thinking. If you wish to know more about how I communicate please e-mail hojoy@rmplc.co.uk for "How I Communicate" document." hjd

"My spelling is fast enough to be conversational." hjdiary

[Age 9!] ...I say show them your cloth of gold the woven metal of my mirth and ur worth make me immortal ho make my particles sing with motion whizzing round these foolish men's brains I be...

[Age 12] Ballet. Exquisite wonderful ballet. To combine such control of self twirled into body with music and self-expression. O joy, what joy! The figures dance in my head...

How to conquer the huge burden of my disability? Overcome the scepticism I almost daily encounter, greet life stoically, live sufficiently comfortably but without extravagance because every available fund must be spent on the salaries of those round the clock carers upon whom my life depends.

I wrote to Superman but got no reply.

...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. ... She is 44, prone to horrible migraines and travel sickness and has no satisfying career because of me.

I am profoundly physically disabled, and will travel with my mother facilitating my communication and mobility, which is not unreasonable given that I am a mere snip of a 12 year old from England...

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.

Notwithstanding all this brave talk, it is sometimes overwhelmingly difficult, and I cannot often bear to think of my future.

My LEA stopped funding my music 2 years ago and last February took away my computer too. It is the stuff of waking nightmare. They despise my individuality and the headaches it causes them.

Childnet web award: http://www.safekids.com/articles/childnet99.htm http://www.childnet-int.org/awards/1999/shortlist/short.html http://www.safekids.com/articles/childnetaward.htm http://www.safekids.com/articles/hope.htm

Sky sponsorship announcement: http://search.dejanews.com/getdoc.xp?AN=435638316

Father's email updates:

Feb 2: "Hero set out on her five+ week round-the-world trip last Friday and is now somewhere in a Tanzanian game reserve out of radar contact..."

22 Feb "She's now in Australia having spent a week in Tanzania and just over a week in Dhaka, Bangladesh. At the Childnet International Awards in ceremony it was announced that she had won the first prize in the individual section for her web mag. Unfortunately she could not be there in person to collect the award since she had been hospitalised because of a fever and dehydration: she seems to have picked up a bug in Bangladesh. However, she is now out and recuperating with family and friends before moving on to New York for the final leg of her round the world trip. She gets back home on 9 March."

Hero's post-mortem (trimmed): hjcv

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.

29th January - 9th March 1999

week 1: Tanzania: International School at Moshi, visited local shops and market, stayed at Tarangire Tented Game Lodge (elephants!)

week 2: Bangladesh: American International School, Dhaka, classical Bengali music and dance, all day boat trip on the Tongi river

weeks 3 & 4: Australia: closed rehearsal of opera Billy Budd, hospitalised for 3 days, a day at Bondi having fun, picnicing, paddling and watching surfers, walk in the rain forest, my mood tumbling unnervingly and erratically down each insect-biting interminable damp grey torrential hour. I think it was here that I parted company emotionally with Tom.

week 5: New York: United Nations International School, rehearsal of Verdi's Rigoletto, exhibition of Picasso, attended a church service in Harlem, 15 minute meeting with the Secretary General of the UN at which I discussed my concern about clean safe water

Earlier impressions (trimmed): [diary#latest]

Returning on a flight with a man who says that I must cure my disability because he cannot stand it any longer and who has suggested to my mother that I be hit when I involuntarily cry is the stuff of nightmare.

...had bout after bout, day after day of uncontrollable yelling and crying and hysterical laughter, could not regain control of my normally rather quiet self...

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. ...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.

Homepage: http://atschool.eduweb.co.uk/hojoy/index.html

About: hjm

"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 was supplied with appropriate software. Now I work in conjunction with my mother on it." hjcv

The contents are divided into:

firstly, a Guest Column (where we publish contributions from eminent writers and other prominent people),
Collected Writings (arranged in alphabetical order by author's name),
The Editor's View (that's stuff I write),
Filched & Pilfered (stuff I've enjoyed),
Coming Soon (next issue)
and Poster & Bumph (acknowledgements etc).

Sept 97-- #1: http://atschool.eduweb.co.uk/hojoy/mag1/mag1.htm

- "Pharaoh's Cup" poem by Ruth Padel (Guest Columnist)
- "Maudie's Institution" poem by Jan Askew
- "From Three Windows" short memoir by Joanna Blamires
- "Looking Out of My Window" essay by Dave Dalton
- "The Ascendent Cat" essay by Julie Davidson ("the death of a cat")
- "Life and Limb" extract by Kath Duncan ("the emotional baggage of surgical versus congenital amputees")
- "Ode to a lost rucksack" poem by Chris Eley
- "Falling?" memoir by Bill Fine ("tandem parachuting")
- Letter from Tanzania by Clare Harvey
- "The Launch Pad" by Iain Harvey
- "Cave Painting, Drawing and Imagining and Art in the Primary School" by Bryan Hawkins
- "Sailing Alone" memoir by Carolyn Morley ("fear of boats")
- Poem by Mick Peter
- Memoir by Janet Reibstein ("a day in the life of a family therapist")
- Essay by Tom Uglow ("a newcomer's response to Zimbabwe")
- "Recollections: Part 1. From the Train Window" by Hero Joy Nightingale ("the pain of being so disabled I am "locked-in" and the realisation as a young child that it is a permanent state")

Dec 97-- #2: http://atschool.eduweb.co.uk/hojoy/mag2/MAG2.htm

- Guest Columnist: John Tavener "Art and the End-Point" (music and religion)
- "Home Sweet Home" by Priscilla Calumet
- Anonymous account of childbirth
- "Genuine Fake" by Richard Bailey (about Vienna)
- "Message to my Parents" by Ian Bunker ("the death of one's parents")
- "Being Irish?" by Wendy Clarke
- "Dykes with Disabilities" by Kath Duncan
- "A Day in the Life" by Imogen East ("a day in the life of a violinist")
- "Na-Mu Myo Ho Ren Ge Kyo" poem by Bill Fine
- "Tsarevitch" poem by Peter Giles
- Grace Knox (asked her class of 13yo's to write something concerning the view from their windows, their favorite places, a window on their souls, and the day that changed their lives, includes "an adopted child's first encounter with her biological mother")
- Short memoir by Guy Lott
- "Empty Bottle" poem by Matthew Morrissey
- Short memoir by John Ramster
- "To Name But One" poem by Lucy Ross
- "Hill towns of the Val D'Orcia: On Route-Finding, Muddy Boots, Tuscan Soup and John Dewey" by Charles Tierney
- "Creightons Naturally" by David Townsend ("being a crew member in the Whitbread Round the World Yacht Race")
- Short memoir by Cally Trench
- "Helping Women to Give Birth" by Carolyn Twohig (midwife)
- Essay by Tom Uglow continued from #1
- "Reality" poem by Sarah van der Wal
- "Recollections: Part 2. Home" by Hero Joy Nightingale ("I waxed lyrical upon the elemental joys that buoy me up")

May 98-- #3: http://atschool.eduweb.co.uk/hojoy/mag3/mag3.html

- Guest Columnist: Kofi Annan
- Essays by Anonymouses (incl "being on the receiving end of an armed robbery")
- "Under the Thumb: How I Became a Poet" by Margaret Atwood
- "Out of my mind with terror" by Melvyn Bragg (out-of-body experiences)
- "From Ulster" by Wendy Clarke
- Kath Duncan on Australia ("a wee motor from Cairns to Darwin") "Going to Boarding School" by Robert Hill
- "Growing up in the country" by Carol Long
- James Macmillan on music and religion
- "The Millionth Muse" by Paul Martin ("a young London actor contemplating his kettle")
- "Some random thoughts on trying to be succesful in business" by Colin McKell Redwood
- "My View of My Job" by Sarah Playfair ("a year in the life of an opera administrator")
- "Joy" a poem by Stewart Ross
- "A Typical Day in the Life of Isabelle Stephens, Outreach Physiotherapist in Jordan"
- "Recollections: Part 3. Oxford Envy" by Hero Joy Nightingale

#4: http://atschool.eduweb.co.uk/hojoy/mag4/mag4.html

- "Conversation with God" by Guest Columnist: George Carey, Archbishop of Canterbury
- Anagrams from Bill Fine
- "A Baha'í's View of Disability" by Paul Booth
- "Travels on my bike - A brief trip to darkest Africa" by Joss Darling ("an account of a cycling trip to the Gambia")
- John Hedgecoe on "photography as art"
- Bridget Hickey on "a Buddhist pilgrimage" (missing?)
- "Recollections of Berlin from 1989 to 1990" by Louise Hopper ("an article from a 14 year old about her memories of life in Berlin when the wall came down")
- "Some naughty things I did when I was young" by Carol Long
- "'Twisting' in Landscapes of T. S. Eliot's Poetry" by Mary Jane Ruhl ("T. S. Eliot's twisting and turning imagery")
- "The Question Why" by Brian Smith ("bothersome thoughts a coroner can't ask")
- "In an ordinary day in a small French village" by Nan Townsend
- "Moving On" poem by Laurie Tallock
- "News Report from Our Man in Bunessan" by Trevor Wade ("a comical account of shipwreck in the Western Isles of Scotland")
- "Recollections 4: Picnic-ing" by Hero Joy Nightingale (missing-- "got too busy")

#5: http://atschool.eduweb.co.uk/hojoy/mag5/mag5.html

- Guest Columnist: Helen Sharman, the first British astronaut
- "Barbie turns 40" by Paul Booth
- Poem by Alan Autrey
- Poems by Robert Berry ("a guy in Malaysia who just happens to know my Scotland")
- Poems by John Birkbeck
- Julie Davidson on Zanzibar
- Jenny Diski considering her lack of faith.
- Kath Duncan waxes lyrical on sailing in the Whitsundays.
- Matthew Hamlyn describes the work of a House of Commons clerk.
- Bridget Hickey describes a pilgrimage (she's a Buddhist) in her 60s into the Thai jungle, and, in a lengthy bio, her life in fashion and textiles and graphology (the analysis of handwriting) and running marathons for Tibet
- Lisa Hitchen describes a sponsored walk in Tanzania
- Dominic Lawson (editor of the Sunday Telegraph) has a very constructive suggestion
- Paul Martin ("Just read it. Don't miss this one.").
- Poem by Ruth Padel
- Mike Townsend tells how he paid compensation to all the individuals on each of the Gilbert & Ellice Islands for coconut trees destroyed by the Japanese during the 2nd World War on behalf of H.M. Government
- Nan Townsend on life in a French village through the eyes of an Englishwoman who spends part of each year there, but who spent 30 years on the atoll dots of the Pacific (married to Mike, above)
- Lex Watson "A very interesting old gentleman with stories to tell, unfortunately reluctant"
- Poems by Matt Wetherby
- "Recollections part 5:" by Hero Joy Nightingale ("being a part of the Royal Academy of Music")

#6 forthcoming

- John Birkbeck: a poem. he was previously also published in Mag 5.
- Gill Cooper: swan rescue
- Jos Darling: coming out
- Cardinal Basil Hume: unable to take on more commitments
- Lucy Kennedy: helping out in Rumania
- George Koromilas: poems by his mother which he has translated from the original Greek
- Joseph Mackin: a fine gin song, a branching out for FTW
- John Mortimer: considering what might be done
- Ned Mueller: a psychologist on twitching
- Bryan Murphy: a poem on Cambodia
- Dervla Murphy: not yet, but maybe
- Catherine O'Brien: the comfort of a middle aged rut
- Diane Payne: a mother and child go walking
- Nigel Anthony Pearce: a ford in India
- Sue Russell: the loss of a wanted child
- Simon Townsley: photographs are much easier
- Maja Volk: Belgrade during the NATO bombing
- Diana Mahew: a Sherlock Holmes joke
- Al Rae: a truly awful analogies
- Hero Joy Nightingale "This time I am describing in rather summary form my journey earlier in the year around the world, prompted by winning a prize for this website"

poster: http://atschool.eduweb.co.uk/hojoy/poster.html

Mystery box: http://atschool.eduweb.co.uk/hojoy/mystery/mystery.html

Aspirations:

"I fear I will never find a partner in life who builds a relationship of love with me. I fear I am not loveable." hja

"I used to toy with two wonderful ideas: firstly, running a seaside hotel where I could live in the penthouse suite writing music all day long and coming down to a freshly made bed and freshly prepared food without having to be within an institution surrounded by other freaky folk, without having to be anything other than my own boss in control of my own life. And people could gather to be sociable round a piano in the bar and I could hear live music every night, and I could entertain my friends with great ease. The trouble is I detest tourists and I don't want to be perpetually amongst people who come and go. I want quiet and I want staff who know me and care about me. I need things to be more personal and more homely.

The 2nd idea was for a place in the quiet green countryside where horses could be farmed for their long tail hair, fields would be full of sweet sweet clover, skylarks wittering overhead, and a quiet cottage industry making cello bows could be built up without the dependence on the fine horsehair from the former Soviet Union that remains the yardstick of the industry. I would be magnanimous as a landowner welcoming visitors to my farm and have a large courtyard where ballet held sway in summer sunshine, where for a short season art regained its connection to the outdoors." hja

Penpal requests:

1997: http://www.disabilitynet.co.uk/classified/penpal/penpal11.html

1999: http://www.disabilitynet.co.uk/classified/penpal/penpal61.shtml

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