I enclose the e-mail interview I gave to Associated Press on 20 June 1999

dear Mara

I am sorry not to have got back to you sooner. I was very busy in the

run-up to half term and have just got back from a nice holiday on Mull in

the Hebrides. Have you ventured up in that direction?

Now to answer the questions:

> Should I be calling you Hero or

> Hero Joy?

The name is Hero. The original one was a Greek mortal whose lover boy

Leander swam towards the light in her window each night until one day she

forgot said light and he drowned. I am far too young to find this anything

but daft. This Hero then topped herself it is thought. She must therefore

not be confiddled with Hera who was a Goddess. Hero is still a common

enough Greek girl's name and it's also been used for various heroines in

literature from Shakespeare to Georgette Heyer. Unfortunately it is so

unusual that many folk don't recognise it is a name and/or they think it

has been given to me because of who I have grown into rather than realising

I have educated and singular parents. I like using my whole name ie Hero

Joy Nightingale whenever the occasion permits but my friends call me (by

invitation) ho and my web handle is hojoy so I get called that quite a lot

too.

>How old are you? Was it 12 (and will I be safe saying 12 if the

> sty doesn't run for another couple weeks or so, or do you have an

upcoming

> birthday)?

If you check out my cv on the website you will see my dob = 26 August 1986.

> I've read your homepage and essays and was touched by your description

> of the day you understood your disability. The one thing that strikes me

> is how much, perhaps, the internet has allowed you not only to overcome

> some of the physical obstacles facing you but also the prejudices of

others

> (re: your means of communication, etc.) Is that true, or have I got it

> wrong?

The internet is a great device and allows me to communicate through the

power of my words without people being distracted by either my

idiosyncratic means of spelling in lieu of speaking or the strange

restlessness of my body. It also of course permits me to work at my own

pace. I can break off for a nap, an epileptic fit, a drink, a bout of

exercise and simply pick up where I left off. I can send and receive

messages from the same person several times a day and I can conceal my age

if I wish to. Leaving messages around the world for individuals to pick up

at their convenience suits me far better than a telephone. In addition its

fun, in particular hearing from complete strangers...

> How important is the internet/ email communication in your life?

very

Has it

> changed your relationship with the world at large?

Indubitably. It immediately brought me out of a clinical depression

(situationally induced) as I leapt at the chance of contact with other

disabled people in preference to psychotherapy at a centre of excellence in

London. Then I seized the initiative back into my own wee hands by

starting up my mag FROM THE WINDOW and setting about seeking articles,

sorting out how to web publish etc.

Then (after a hard year's work, ie) I got news of my award, and when I then

decided to travel to 4 continents and not

just hop off to Sydney for the prize-giving, I used

the internet to organise my sponsorship and my host families and arrange

for my special needs to be properly catered for and understood in the

places I was going to stay, as well as explaining the purpose of my travels

and what I hoped to do in each place.

So, it's a tool for me not an end in

itself. My brother has used his computer for playing endless silly games

and has learned a great deal along the way. He now uses the internet and

has learned html which is certainly more than I have done but he seems to

spend his time surfing and downloading from big commercial sites - eg

finding out about models of car that he couldn't afford even if he were old

enough to drive. It's as if he's toying with it because it's there. For

me, it's an exciting vehicle for self-expression and connecting with

people. So we are quite poles apart. The internet closets Alaric in his

room cutting him off from life out there that he could be living, while it

connects me to life out there since I am not integrated into any local

social circle. I don't dwell on what I might have been like if I were not

disabled because it's too ridiculously silly so to do but I do find myself

quite put off people if they describe themselves as surfies. Why on earth

would an able-bodied person not be out there playing tennis, doing a street

collection for the Save the Children Fund, bopping the night away,

developing their cooking skills or practising on their cello? I can quite

understand why some people don't check their mail often. I spend very

little time indeed on the net, maybe surfing for specific information a

couple of times a month.

> And the magazine. You are ambitious (successfully ambitious, I

> hasten to

> add) in tracking down some heavy-hitting writers. How did that come

about?

No idea. I'm going through a lean patch at the moment, having had no reply

to lots of letters. It's very difficult for me to explain or even

understand why some small percentage of my targets respond and an even

smaller percentage respond with an article. But it's very nice when it

happens. I am very appreciative of all the articles I've been sent and the

encouragement I've received to continue. Following publicity particularly

in TIME Digital I received "fan mail" running into hundreds, mostly from

people who didn't expect replies but wanted to say Brill, Go for it, Keep

it

all going, (or Don't Let the Bastards Get You Down). It is still the case

however that most of my contributions come

from my own circle of acquaintance. I'd love to turn that around and

receive more unsolicited contributions. I don't edit articles, I let

people speak with their own voice, but I do of course reject some,

occasionally embarassingly from people I know. Of the unsolicited

material I get, by far the greater part of it is poetry and by far the

greater part of that, very truly bad poetry in my opinion. There are some

people I am very sad not to have persuaded to write for me, in particular

Kate Adie, Alan Bennett, Princess Anne, Desmond Tutu and Roger Bannister.

No matter, there are plenty of other fish in the sea. Wouldn't it be nice

to be so popular that folk queue up to be in FTW? Ah well one can but

dream.

> How do you choose the people?

Well I have made a target list for each edition with 3 categories of

persons: known to me people, people from different walks of life who sound

as though they may be interesting (eg chief constables, retired diplomats

who have served in the colonies, authors of books I have enjoyed such as

John Hedgecoe or Jenny Diski), and very well known people who may be

flattered at being asked if they might like to contribute a guest column.

I either surf the web or use Who's Who to contact them or send it via their

publisher. I usually ask pa's/secys not to block it reaching the intended

victim and I have some letters from pa's and publishers assuring me that

they are nice and haven't (though this of course doesn't guarantee a

response). Helen Sharman was the most surprising because she wrote to me 6

months after I wrote to her and then it was another 9 months before the

promised article could be written since she said her window of opportunity

was Christmas week, and, cor, she kept her word. I have no idea why some

stranger would spend their holidays writing for me. Would

I do that for someone, would I be that nice?

Who are you most proud of persuading to

> contribute?

Well Kofi Annan of course, a mighty gentle giant.

What accolades have you received?

>

I tend to think I am not much noticed but I have had some nice wee articles

in the press (in particular I liked the one in the TES on May 28th), I've

published some of my No Can Do letters from people such as Alan Ayckbourne

and Ian Hislop, I have of course been encouraged by Mr Annan both in person

and subsequently, and have recently received a very friendly letter from

the Secretary of State for Education including a suggestion that we meet up

(and that it makes him tired even to contemplate my numerous achievements),

and then there's my prize, and there's a considerable sheaf of papers that

was delivered to my LEA last year from my friends both personal and

professional writing in support of me and my talent. I'm not someone who

has found it easy to thrust myself forward despite my personality telling

me so to do. I hate competitions and competitiveness, I don't like tests

exams etc and I'm not on any conventional path that provides the sort of

opportunities other young composers, artists etc can use to leg their way

up the career ladder into public recognition and employment.

> Now, tell me a little about your life. This may sound a naive

> question,

> but I'll ask anyway: How would you say you are like any other 12 year old

> girl?

Well sometimes I feel a million miles removed from my contemporaries and

identify more with young adults but I don't really feel anything other than

12. Sex eg scares me, I don't feel I understand it, ie the passions and

the way physical arousal happens and dictates subsequent behaviour. It can

seem so very irrational and OTT. Not that I am a rational being at all, I

am a creature obsessed by emotion, but not in the least bit ready for more

seesawing which is what people warn the teenage years all too often consist

of. Last year I didn't want to grow up at all and became alarmed at the

size of my body as I burst out of children's sizes and had to start

shopping in the adult depts. Why this should upset me is anyone's guess

because I have looked forward for years to outgrowing all the mickey mouse

rubbish that scrawls across children's clothing but I didn't want to lose

myself and I didn't want to race into being a grown up when I feel I've so

many things not sorted out about grown up living. Of course I settled down

when I realised I wasn't really suddenly lurching into adulthood and am

back with my old self, with the comfortable familiar feeling that I am a

child but the world's not moving fast enough and I must take responsibility

for my life cos there's so much to be done and I really don't feel I can

hang around waiting to grow up before getting on with things, ie my

impatience has returned and I'm back on route, learning skills and doing

stuff of relevance to my future life.

Other 12 year olds live lives constrained by classrooms. I could not

tolerate it even for a day. I could not tolerate it at 6 and that is why I

was allowed and expected to leave my mainstream school. Since then I have

not been structured by my LEA at all and although I am sometimes lonely I

would not change places for all the tea in China, Russia, Tetley's tea

bags, the world with anyone who attends school. When I meet

schoolchildren, they are obsessed by school and seem unable to discuss much

else. Likewise if one listens into conversations. When I visited schools

on my recent travels I received confirmation that my mind is wholly

elsewhere: I am used to organising myself and taking responsibility for

what I do, I am used to having to contemplate costs and sources of funding,

I am used to not being able to do everything I set my heart upon, I am

used to dealing with an unsupportive and hostile bureaucracy, I am used to

finding out how to do things from organising for incontinence pads to be

taken directly to Oz for the 2nd leg of my journey to how to complain about

my lack of education, or how to work with those who give me personal care

even when I resent their intrusion into my life, or how to write a score

for a classical orchestra. I am leading the way, demanding, unpassive...

> How are you unique?

Well my disability seems to be unique for starters. Quite a host of

qualified professional people take just one look at me and say so. I am

wholly unlike a person with cerebral palsy, wholly unlike a person with

dyspraxia, Huntingdon's chorea, spinal muscular atrophy, head injury,

stroke, Parkinsons ... and yet I am obviously physically disabled, and

physically disabled to a degree that leads to my consultant paediatrician

Dr Appleyard coining the term my "locked-in condition". I cannot even cry

out in pain or for attention, or flail my arms for this purpose either.

Yet I am always on the move, I am not paralysed but trapped by an excess of

chaos that takes hands on help to damp down and allow my willed movement to

be felt. I require a considerable amount of hands-on help through the day

over and above basic care, exercise and communication.

Because of this uniqueness of disability, the means of communication built

up in therapy over my pre-school years is also idiosyncratic and personal

to me, other augmentative means having been not accessible to me however

useful to other people. My lot is therefore difficult and unique. I am

faced almost daily with the emotional/social impact of being unable to do

anything

independently. I am very dependent upon those professionals who work

closely with me to be my advocates because of scepticism about whether I

am me and I am the author of the words I spell. New people neither trust

me

nor my mother, so implausible do I seem, and yet I, because of my talents

and personality, demand that I pursue an active and rather public life. I

am not hidden away languishing in some institution, I am not closeted at

home and over-protected. I have been riding for nearly 11 years, I go

swimming and when offered the opportunity I go canoeing. I visit as guests

of the companies the Philharmonia Orchestra, the Royal Ballet and

Glyndebourne Opera. I have held places at both the Royal College of Music

and

the Royal Academy of Music in London (which is 60 miles away and therefore

quite a long way to commute for the day). I have holidayed in Europe and

Wales and Scotland. I keep in touch with a large number of people through

e-mail and snail mail (my Christmas card list is around 80 select folk, my

address book runs to 357 entries and still relies on mum's filofax to back

it up), and I have organised and made happen my huge journey

around the world, besides my outing my music, writing, developing my

webzine and laying bare my not inconsiderable and unambitious proposals for

art installations. My path through life is therefore unique, and although

everyone's is, mine is more different from the norm than just about

anybody's.

My individuality is accentuated by the viciousness of my local

education authority who have failed to provide an education for me and have

failed to provide for my special educational needs, failed to draw up

a Statement of Special Educational Needs until I was nearly 10 and have

since then failed to review my Statement in accordance with their

statutory duty. They have seesawed around, sometimes supportive of

something and sometimes not. They have failed to take steps to ensure that

there is any continuity in my life. For instance? The key objective of my

Statement is the provision of enablers so that I am no longer dependent

upon my mother but can again communicate easily through someone else who is

paid to be with me doing this as a job. Of the 4 enablers I have trained

in my full spelling system, one was doing it voluntarily and was lost to me

when I left her nursery, one is still around but unavailable as a

communication assistant because of the nature of her professional duties as

the Principal Occupational Therapist in the area, one left her paid post as

my assistant to take up alternative employment elsewhere (6 years ago), and

the other is a family friend who has made herself available for occasional

"babysitting" but who has other committments including now her own baby.

The LEA have never even interviewed anyone for this post since 1993 and

they will not heed the advice of my psychologist and OT and art tutor and

parents about the type of work that is involved and consequent upon this

the calibre of person that needs to be sought. Not merely is considerable

intelligence and patience and determination needed to cope with my means of

communicating and be someone who empowers rather than frustrates me but the

responsibility of having sole charge of me involves not a small learning

curve and the right degree of confidence and initiative. I cannot stand

bossy authoritarian folk and would not develop a good enabling relationship

with such a person but neither would I feel safe with a wimp or someone so

slow that they cannot easily predict what's needed or make adjustments to

my equipment or itinerary to ensure comfortable outcomes...

The LEA also

failed to replace the supplied computer when it broke down and have never

in all my life bothered to provide even a word processing package for me

(although they supplied computers between 1994 and 1998).

They are not bothered by whether I suffer deprivation or not. They have

had advice that I have been traumatised by the loss of the Royal Academy of

Music but failed to act decisively to try to salvage that place and have

since not bothered to support any of my developments. The local art

college were prepared to meet to discuss whether I could visit there but

the LEA said no, although subsequently they organised for me to use the

library there.

In the last 2 years things have got far more acrimonious

and have swirled from the tiresome to the horrific since they have decided

against all advice to send me to a residential school for children up to

the age of 16 who have physical, sensory and intellectual impairments, this

for a child whose fees they paid and whose place they sought at the Royal

Academy of Music where at 8 I was studying with the undergrads and

postgrads one day a week. It is a rollercoaster of nightmare proportions

lived while I am awake and fully conscious. They have this year been

telling the newspapers that I have not had my needs assessed because of

some sort of recalcitrance on the part of my parents. My parents cooperate

with nearly everybody. I have lived my life in a goldfish bowl with no

privacy for nearly 13 years. My mother is far from reclusive being a

Glaswegian chatterbox and an accurate reporter of my progress to any

therapist or other professional who wants to check me out. I used to be

passed about from person

to person and if there has been a lack of cooperation it is on my part and

not my parents'

because I just will not be nice to people who are not nice to me.

I lost

my patience a lot of years ago with questions of establishing for the

umpteenth time if I am intelligent. If I was assessed as beyond my years

when I was 2 or 3 or 4

and have shown no signs of any degeneration, I must still be intelligent

and not mentally incapacitated or just plain ordinary. If I was at 6

requiring to be based within a grammar school for 12-18 year olds and such

a place was sought for me by the LEA, how can it be surprising if at 12,

and after 6 years in an adult-infested world, I write and think more like a

young adult than a 12 year old? If at 6, 7 and 8 I wrote without being

taught and without parents who can sing or play an instrument, music that

gained me admission to the prestigious London Colleges (both of them

simultaneously) and to boot to undergraduate classes therein (where I was

reported to the LEA to be up to scratch), how is it that I can now be as

thick as a proverbial plank. Does anyone agree?. No, all the advice to

the LEA is that I am extraordinarily bright. Why do the LEA not heed this

advice? I have no idea.

Both the family psychologists supplied by the NHS at the moment

to help us cope with our situational frustrations have and are advising

that we move out of Kent because they do not believe that the wrongs will

be righted, but this is easy to say and not so easy to accomplish. What

work would my father do? Where should we go? Why should we seek asylum in

some other part of the UK? Why should we separate ourselves from those

professional persons who are so supportive of me? Why should we disrupt my

brother's education and friendships because the LEA will not act in

accordance with its statutory duty?

Why do the LEA persist in

saying I have not been assessed when my Statement of Special Educational

Needs is the result of formal assessment by the LEA and when my file is

stuffed quite preposterously fat by letters and reports from those who know

and support me, indeed from a greater variety and number of well-qualified

professional people than probably any other file on a Kent child?

What

effect has this hostility and unwillingness to follow correct procedures

had upon my little self? It has cast me into anger, clinical depression,

acute frustration and perhaps worst of all, fear. I am so very afraid. I

am afraid of what hurts adults will inflict upon me. I am afraid of being

denied things that are meat to me, such as the company of intelligent

imaginative young adults, the ability to write, the freedom to be myself

rather than be locked in by my disability. People have the ability to

restrict my life to one of tedious passivity that would cripple my spirit

into miserably violent hatred. I am afraid because my LEA have shown

themselves to be unfeeling and uncaring, despite the large numbers of

persons who have clamoured eloquently upon my behalf. I wish I could be

stronger in the face of my fear. I ought to identify with the oppressed

everywhere & maybe I do but I cannot bring myself to imagine the lot of

others who are victims of injustice, who are eg tortured political

prisoners, because the hurt of being me is too great to bear and I run from

it, I hide from it, I rush to bury my head in the rough cloying sand, my

eyes oblivious to the irritating grit, my mouth and nose filled with the

rotten taste of dead shellfish, my breath difficult, my heart pounding, I

don't want to know, I can't cope any more, I can't go on like this for a

long lifetime. But I do, because I have not got the power to do otherwise,

and besides which if I can hide the fear and not myself then I'm a skippity

merry little girl convinced that I can do all manner of things if I can

only live for a century or so. I have so much to do. I just need help to

make it happen and I do not want to be destroyed by the storm of negative

emotions that the cruel LEA have caused within me. I had some friends last

year (drama students from Bristol) who wanted to perform some of my poetry

from my darkest years when I felt I was truly going mad but the venue fell

through and it then came to naught because of my award lifting me

emotionally and physically beyond that, but one day perhaps "emotions of a

thwarted crip child" will see the light of the dark theatre.

>What are your dreams, goals for your future?

Self-determination. A busy and productive and useful working life

balancing original work in ballet, music, installation art, poetry, writing

and film 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 millenium. 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 still depends upon luck. It

is for example, absurd that a service exists merely because a dedicated

person from a foreign country made it their life's work to provide it, but

it 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. It's how I've changed as a

result of my travels.

> And school, is there a good chance that you'll win the battle with

> the

> council and be able to return?

I don't want to go to school. I want to be helped to attend college or

university but I could not cope with the demands of a full degree course.

If learning environments are wanting to demonstrate that they are

practising that trendy concept of "inclusion", then I shall be the first to

ring their doorbell. I know I have something to give because so many

people tell me this, so very many people write to me to tell me how

inspirational I am, or how they adore my prose etc. I know I would derive

immense benefit from the shelter of an accepting and intellectually

challenging institution such as Oxford or the University of London. I

dream of resources, encouragement and social networking and I know that

what I dream of is what is on offer to students. I also know that I am

totally useless at doing what I am told to do and that I do not fit into

syllabuses and curricula at all. They might as well be a prison cell. I

need an environment that is empowering and not thwarting me and that can

take seriously the contribution that I could make if I were only allowed to

blossom as me. It is one of the sad facts about the course of my life that

the discoveries I all too often make about myself are that I do not fit in,

I do not conform and that people do not give time to non-conforming folk

however needy they may be. And so I do not hold out a great deal of hope in

this direction but o if one is just dreaming ideal outcomes then the

opportunity to develop some of my placetics (room sized installations)

while attending a high calibre art college would perhaps be top of my

agenda followed by the actualising of my 2 scored ballets and the

opportunity to connect with professionals in the development sphere in

order to further my knowledge of the management of change. First stops the

local water boards, the history section of the British Library, Oxfam,

Unicef, Loughborough and Warwick Universities and the London School of

Hygiene and Tropical Medicine. As I said I have a lot to do and I have to

get on with it whether anyone is helping me or not, and somehow keep FTW

going and do all the usual stuff too (exercise, eating etc). What a good

job my mother is so competent.

>

when did you last attend?

February 1993. I was 6 1/2 years old. It's a very long time ago and why I

have no habit of following anyone (not that I did there, that was part of

my problem, I was just then impatient to get on with science and obsessed

with the music revolving in my head and very excited by the definition of

numbers and other stuff that just wasn't on the curriculum in an infants'

school). But they did recognise my talents and recommend that I be much

accelerated - right beyond primary school and into secondary with project

style working to suit my attention span and disability, and of course

suitable enablers too. It just never materialised, as I recently reported

to

the House of Commons Education and Employment committee looking into the

education of highly able children (report published by HMSO, 28 April 99)

and so I have gone without and grown into my uniquely unique shape.

> Tell me about the role and importance of music in your life?

When I was small I thought the din quite a burden and sought to shed it as

well as I could. I have not been helped to write music now for 3 years and

since the place at the Academy (where I had the happiest time in my life)

fell apart I have found music very painful. I have a portfolio of scores

from yesteryear but am cut off from composers and musicians and although I

intermittently feel a great surge of "must do", I don't. My psychologist

thinks it is my greatest talent, and my dad tries to encourage me in his

own

clumsily supportive way but apart from it being difficult for my mother to

take dictation in a language she does not herself know, it isn't what I

want right now to be doing. I want to write a book about my journey around

the world and find sponsorship for starting my water campaign. I cannot

have many things on the go at any one time because everything takes me such

a long time. This letter has taken a week of working, morning and

afternoon, because I have to stop often and the process itself is slow.

Mum can now work simple things on the computer like web publishing, word

processing, grabbing stills from video but listening to me and typing it up

as a score gets her feeling so inadequate she screeches at herself and

bursts into tears. She enjoys empowering me and and does her very very

fine best in all sorts of ways but music is a closed book to her and so I

await somebody and some time that has yet to be deliverecd by my LEA, and

may at this rate never be, Statement of Special Educational Needs

notwithstanding. I used to think I could not live without outing the music

of my imagination, but I have proved that I do still live and noone gives

a damn that I am hurt. I get fed up with being asked if I still write

music. I still write music all the time in my head. I still store neat

symphonies away within my own memory. It's still there and could be given

out but is it worth the effort if it yields only pain?

It is a

considerable effort but used to be a pleasurable one. When I was 6 and 7

years old it was truly delightful to be writing out my music and I spent 20

hours a week doing so, working when a man was sent round from Kent Music

School (his not inconsiderable fees paid by the LEA) to stuff my notes and

expression markings into a computerised score. He was available only on

Tuesdays, Wednesdays and Thursdays and so I worked 9 till 6, 9 till 3.30,

and 9 till 7 on those three days with breaks for toiletting and lunch, but

we fell out over his inability to produce my music in playable form after

all my hard work, and he was taken off the job by his boss. It upset me

that when students at the Academy asked for parts in order to play my music

on real instruments as I had dreamed of hearing it played, I could not

produce the parts, I could not hear my music winging out of their cellos

and harps and timps etc. My music could be printed out in full score and

in such a manner impress the London Colleges but noone would make me the

parts that I had dictated note by note to Colin (5 months work for one

score). It was one of those ding dong resourcing battles with the LEA

which has been resolved (can you believe this?) last month when they

accepted their responsibility for enacting this part of section 3 of my

Statement. It's only taken them from January 1994 when told of the problem

to May 1999 to come up with the solution that was advised throughout - get

it copied into a better music programme.

Meanwhile Colin has died a sad

and untimely death and although I had not seen him for quite a while it

does not detract from the pain of my grief because I loved him and because

the way we worked together was so special. He set the standard by which I

measure helpers. He was always responsive and considerate around issues of

my age and disability but he responded as no other to my whimsy and pixical

personality and if anyone should ever ask who has been most supportive of

you other than your mother the answer would be the endlessly patient Co.

I never doubted I was loveable when I was in his company. I knew I was

loveable. I hope I one day meet another person who makes me feel like

that.

What is the din of music in my head? It is the accompaniment to my life.

When I sit on the sandy Hebridean shores I love, music wafts into me like a

fragrant breeze, gentle choral songs mostly there. The same place in

winter grows sturdy symphonic braying, as if I am hueing out of solid

granite a crystalised essence. My dear back garden at home is loud with

cellos in springtime, sometimes in unison, sometimes just a solo as

eloquent to me as any Shakespeare soliloquy. By August when the cabbage

whites are flitting, the pianos and tubas are to the fore and I am most

productive then when the pianos dominate. Into autumn they dance with a

lot of melancholia, long unyirdly essays on sadness, regret, loss and

bittersweet trios for cello piano and viola or flute or o dear in creeps an

oboe. The pianos fade as November draws in and the orchestra clashes

noisily into its familiar slot. What's new this season? And off goes my

mind, smoothly and without difficulty, playing with the notes, juggling

the instruments, enjoying the now familiar feeling. It bothered me as a

small child this endless torrent of new music because it both distracted

from the outside world and was another way in which I was different and I

didn't want to be different, I wanted to be part of it all.

But getting

some of my music out of my mind and into the public domain only served to

emphasize that I am different. Cor blimey! What age is she? It allowed

me to be recognised as me, it allowed me to move along my own path as I

need to do but that path led me further and further from the norm. It led

me into my first clinical depression as I ran into my self and immersed

myself so successfully in my music that I could not find my way out. I

could not spell, I could not eat, I could only cry. I did not want to be

so different. I wanted to be like other children. I cried and cried. But

I stopped crying when I stopped having to conform, when I stopped comparing

myself to others around me, when I was allowed to be me, encouraged to be

me and could enjoy being me. Somedays I get an idea and long for quiet

time to hone it into shape, sometimes things happen and music out of

character with the background sows its seed in me. I remember when there

were starlings yelling in the garden, strident screaming day after day.

Then after a spell of dull weather I was pushed up the garden to where the

new pond was being built. The starlings formed a circle in the trees

around us and kept up their yelling. The incomplete pool was full of water

and on the surface lay 2 drowned starlings neatly side by side stiff and

bedraggled. Their comrades had kept up their grief or whatever for 4 days.

They stopped when we rescued the corpses and quietly disposed of them. My

mind grew a wonderful chanting song for a male voice choir with an

insistent beat on timps and a chattery piano out of this experience. My mad

episode after the RAM fell apart grew me a huge operatic ballet with

surreal elements and a grisly fairy tale storyline that was much more

garish in tone (visually) than anything else previously attempted and

unlyrical compared with my 2nd ballet. When my dear friend Caroline died

aged 40 the trumpets would not stop for a very very long time and it was a

most peculiar sensation to be tearful with grief even while a jiggle of

bright beaming music called me towards vitality and celebration. My music

develops and changes as the years go by, regardless of whether it gets

written out or remains within my head. I don't know whether it would be

considered "better" music or more "sophisticated" music now I am older. I

still like the

stuff I wrote when I was young, although it is obviously the work of a

child too anxious to please. "You do not repeat yourself enough" and

subsequent scores show an alarming tendency towards

repetition. I think I did best when I was just allowed to write what

pleased me and given such help as I asked for in order to be able to

actualise it accurately.

And

> writing?

Writing is everything. Without writing I am nothing because everything I

feel think and need must be conveyed through my spelling. Language is fun.

I lost patience almost at once with being communicative in a simplistic

way. "What do you want for tea? Chips or mashed potato?" I am supposed

to answer with a word? No no no. Why use one when a hundred is far more

fun? Yet I often can't be bothered with conversation because it seems not

to be getting me nearer my goals, it seems to waste my time as tv does,

there is so much to be done, I often prefer my own company, being enabled

to just get on...

and I repeat myself far too much, spend

hours and hours writing individual letters to people dealing with the same

things over and over again, caught up in a spiralling seeming self

obsession when all I really want to do is get on with my life. (Like now,

like now) I am

obsessed with self-expression but I do not want to be obsessed with myself.

Fling out emotions in art or music, get on with the next thing, it is not

introversion but the driven passion of the artist to externalise self,

parade self.

>

> Did you make that trip to Africa (was it Africa). What was that

> like?

Golly, you don't half ask big questions. I got news on 30 November 98

that I was an award winner in the Cable & Wireless/Childnet International

1999 Awards and that I was being funded to fly to Sydney, Australia for 4

nights B&B in order to collect my prize. Because of my disability they

would pay for 2 people to accompany me. 4 nights! Cor blimey, no, no, I

can't go all that way for that. O boy, I'm going to Australia! My website

has won an international award! I told them I would prefer a contribution

towards the cost of my trip rather than them providing me with a cheap

ticket with conventional stopover options. I had an altogether more

grandiose plan in mind. I wanted for my first trip beyond Europe to see a

bit of Africa, Asia, Oz and America. I rapidly decided I couldn't be

away for months and that I had very little time to get it all together

since I had to be in Oz (1/2 way around) on 18th February. I decided I had

to limit my objectives to a week in each place and a limited number of

places and a limited set of targets for each. I found out there were

international schools in Moshi in Tanzania, Calcutta and New York. In Oz

there was my e-pal Kath and my dad's godmother.

I got in touch with ECIS

(umbrella organisation for the international schools) and they were very

pleased to help me, for which I am eternally grateful. The point of

contact knew Tanzania and New York Heads personally but thought Bangladesh

would be easier to organise than Calcutta. In next to no time I was

e-mailing teachers at these schools and they were offering to organise host

families and transport etc. Having found places to stay, I set about

estimating the costs of the trip and nearly gave up. My mother did most

of the sums and arrived at a total of £12-13,000 to cover the costs for 3

people for 5 weeks. Where on

earth would I get that sort of money? I was so upset, I felt such a naive

fool, dreaming dreams with no sense of reality. My mother didn't even

pause for breath. It's going to be tough raising that in such a short

space of time. What? How? For goodness sake, she's being serious! You've

got to get yourself some sponsorship. OK. We made up a hit list. I wrote

a begging letter and made up a small portfolio with my cv, proposal etc and

off went 40 letters to the Chairs of leading companies, but it was right

onto the Christmas holidays and not a lot happened apart from one cheque

coming back. Between Christmas and New Year, another batch went out, and

to a lot of trusts too. Panic set in. It wasn't going to happen. Then a

very very large donation came in from an anonymous benefactor (ie I know

who it is but I'm not allowed to say) , and another batch got sent out and

then it was only a fortnight before setting off and the money wasn't in but

I had to have my inoculations and so on, I had to assume I was going. All

the packing lists were drawn up and a list of things that had to be done

and then in the final fortnight it all just went into overdrive. Enough

money was there. The head of a very well known company telephoned and

spoke to dad offering to underwrite the trip, everything had to be in

place, visas got, medical forms for 5 different airlines, insurance, car

hire in Kenya to get us from Nairobi to Tanzania in a car that would

accommodate 2 wheelchairs, 5 weeks luggage and 5 weeks incontinence pads.

The latter weighed 30 kg. and measured about a metre cube in volume.

Sorting out my baggage allowance suddenly seemed

rather important. Mum filled out all the medical forms to ensure they

understood that I wasn't travelling what you might term light. I arranged

for half my pads to be taken direct to Australia by the competition

organisers. We arranged for winter coats to be sent to Auntie Nellie (dad's

godmother), for taking onto New York. I wrote long letters to the schools

to ensure my special needs were understood (you can see one on FTW diary

pages) and to ensure my objectives were understood: I did not want to be a

tourist, I can't stand sight-seeing, I like meeting people. I got "To Whom

It May Concern" letters of introduction from my psychologist and from my OT

to smooth my path with strangers. The schools photocopied these as I went

around, along with a document entitled "How I Communicate" and eventually I

distributed around 80 of all these. I tried on summer clothes from last

year, discussed mosquito nets and catheterisation. I could not take the

recommended anti-malarial tablets because of my epilepsy. My mother was

briefed in what to do in various medical emergencies. The travel agent

told dad he'd be glad when we were safely back. We needed quite different

clothing for each place since the advice was longs and cover up arms

against biting insects in Africa, long modest skirts in Muslim Bangladesh,

shorts and t-shirts for summertime in Oz but something for sudden downpours

too, and smart winter clothes for sub zero temperatures in New York. In

addition I needed the ordered welly-boot wheelchair to be built. I was

going a boat trip in Bangladesh and would need a lightweight chair that

could cross rough terrain. We took delivery the evening before we flew out

and we had to spend the rest of that evening sewing together the seat and

sticking tape around the handles. In addition mum had to organise how I

was going to sit in an unadapted vehicle. I normally travel in my chair in

a vehicle with a ramp and clamp down facilities. She devised a waistcoat

with a velcro back which attached to a square of velcro that was attached

to the car seatback via long straps so that it could readily be

transferred to any front seat or estate car rear seat and would hold me

in place so that the inertia reel belt could do its job in an emergency and

it would not be such hard work for me to maintain my own position as we

drove along normally (my wheelchair has side supports you see). This had to

be cobbled together and trialled before final plans were made. We bought

guide books and maps and films and spare batteries, hair clips and so on.

Mum even remembered to pack a plastic mug for me to drink from because I

cannot drink from cans or bottles (nor can I drink fizzy drinks). She got

herself a 2nd pair of specs, a pile of travel sickness pills and stacks of

injections in case of migraine. I had to get my website sorted and a new

edition of my webzine published so that it would look up to date when the

awards ceremony took place. I had to thank all my sponsors and explain it

was go go go to everyone. I had various days taken up solely by the press

in the week I left and one of the articles,reprinted in Woman magazine, the

Canadian National Post and the Sydney Morning Herald as well as the

original one in the Telegraph was rude enough to say that my mother looked

10 years older than her 44 years and that we lived in chaos. I think it

was

unkind. I think it is unimaginable to almost everyone just how much my

mother manages to achieve both on her own account (she is chair of 2

organisations, one of which she has organised lottery funding for and taken

on 4 paid staff) and for me. We may live in a cluttered home and it may

appear chaotic but it is really very practical in an anti-institutional

sort of way. It's the sort of home where things don't get thrown away, just

in case, and where my mother knows exactly where everything is. She very

rarely mislays anything and always can recall when she last had it. She

has an exceptionally fine memory for conversation and events, being able to

reconstruct whole swathes of our past in detail and then pull evidence out

of proverbial hats to demonstrate the veracity of it (eg 2 of my toes are

deformed. Nobody before has ever commented on this but it's getting worse

and my mother knows she photographed my feet when I was paddling aged 5

when they were very stripey from wearing sandals and getting suntanned and

so she can extract this photo from the millions she has taken in order to

check out my growth. There have been so many problems with my development

that the consultant paediatrician and the orthopaedic consultant have no

idea what my toes looked like before. Toes have always seemed

insignificant.) We also used my contacts in the

opera world to organise for me to attend rehearsals and meet the artistic

management at both the Sydney Opera House and the New York Metropolitan

Opera House. I established contacts with a New York City policeman too but

left having exchanged notes with only one of my host families. I also

wrote to ask Kofi Annan if we could meet up in New York and reminded him

that he had contributed to my webzine the previous year. There was no

reply to this before I left.

My mother has never been such a trip in her life though she had visited

Ghana on a Commonwealth Instuitute geography field trip when she was 17 and

she had spent 5 weeks in Hong Kong when her best friend was getting married

out there when she was 26. My other travelling companion was 23, male, an

art

student who'd spent 6 months in Zimbabwe, a hol in LA, with no history of

care work, but a longtime Very Good Friend of mine.

I had an indescribably wondrous journey out of my past life and into

somewhere new. I am still trying to make sense of my new self. I am

working on an installation to represent it graphically but more importantly

I am trying to get it into book form. Things like writing this get in the

way.

Briefly, I achieved my targets and I met some very inspirational people. I

even got an e-mail in Bangladesh from the office of the UN Secy General

saying he'd be delighted to meet me. Here's a very very short list of what

I did:

REALLY ROUND THE WORLD

29th January - 9th March 1999

The first day preoccupies me emotionally and this is in no way reflected by

the briefness given to it here.

week 1: Tanzania

guest at the International School at Moshi, staying in the Head's bungalow

during his absence at a conference (great views of Kilimanjaro from the

garden)

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).

week 2: Bangladesh

guest of American International School, Dhaka, who found me a host family

in the diplomatic quarter, built a ramp up to the front door of this house,

and put a minibus and driver at my disposal for 8 days

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.

weeks 3 & 4: Australia

the first 4 days I was due to stay as guest of Cable & Wireless/Childnet

International (the competition organisers) at a prestigious downtown hotel

in Sydney within spitting distance of the bridge and opera house.

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, 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.

afterwards I stayed 5 nights with my dad's godmother just outside Sydney

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

then I flew north to spend 5 nights with my wacky lesbian e-pal Kath who

has one arm and one leg (born that way), is a journalist formerly with ABC

and very New Agey and radical feminist who has a heart of enormous

dimensions made of gold

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.

week 5: New York

where I was hosted by the United Nations International School who met and

transported me from the airport to my host family, a parent of a 6 year old

at the school who lived in the fab apartments next door, right on the edge

of the East River (views of storm, snow, sun, tugs and lots of blue water)

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 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; and had a 15

minute meeting with the Secretary General of the UN at which I discussed my

concern about clean safe water and he encouraged me to agitate for change,

to raise awareness of the problem, stay in touch etc....

then I came home.

the trip was made possible by :

the generosity of ECIS, the international schools, and my sponsors who

were:

Ansett Australia (free return flights Sydney to Ballina x 3)

Avis (week's free car hire in Sydney)

Bretts ( £150 )

Childnet International (£2400)

Colette Desaint (£500)

DS (underwriting)

The Duveen Trust (£500)

GKN (£750)

Marley (£200)

ML (£2500)

New College, Oxford ( £250 )

Lord Northbourne (£75)

Research Machines (£100)

Robertsons (£250)

Sarah Playfair (£100)

Schroders (£500 )

Singapore Airlines (1/2 price Dhaka to Sydney x 3)

Sir John Swire (£700)

Sky TV (£2850)

The Tory Family Foundation (£200)

United Airlines (free excess baggage Sydney to New York)

Virgin Atlantic (free flights New York to London x 3)

(total cash £12,025)

the help of Andrew at Brockman's Travel who sorted all the flights and

insurance

and my friend Tom who came along as second indispensable carer having got

time off his Masters so to do.

HJN

In terms of my emotional journey, the important milestones were the first

day (culture shock), meeting Kate and visiting her Centre for Street Boys

in Moshi, meeting Val and her patients at CRP in Bangladesh, and Kofi

Annan in New York. My regret was coming home no longer best of friends

with Tom, a still raw wound there.

I returned home with a huge sense of achievement. I had made a dream into

a reality. I had made something happen and I was determined never to sink

into despair again. There is a whole new agenda in my life as I detailed

above. I have a sense of responsibility, a sense that I must make myself

useful, a sense that others must understand their responsibility too. 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. I enclose

descriptions of 3 episodes on my journey.

Firstly, Florianna:

"Back in Moshi I had some long chats with Florianna the houseworker. She

cannot imagine her life altering from how it is. She and her friends pray

for me too. Her husband is a gardener and they have three children. Their

previous employer helped them to buy a small two-roomed house with a

vegetable plot. Previously they had had a rented one-roomed place less

than 10 feet by 10 feet. Although the vegetable plot was only about this

size, it gave her both pleasure and produce. Her parents had been farmers

and although her father died a few years ago, her mother still worked the

land not far outside Moshi.

Florianna lives less than 10 minutes walk away from her work. She is a

woman of considerable presence, one of those people who carry their own

atmosphere around with them apparently unselfconsciously, certainly without

arrogance. It is a quiet presence that generates respect. She is a very

gentle and calm person with expressive hands and a great deal of delicacy

about her. She was always spotlessly clean and seemed to quietly enjoy her

work of looking after the headmaster's bungalow. She baked me a very light

and delicious sponge cake, got the toaster mended, bought eggs, did the

washing and ironing, making the beds and tidying around, giving us

breakfast and putting fresh flowers in all the rooms.

She has 3 children. The oldest is at an English medium primary school, the

middle one is at a workers' creche at the international school and so is on

campus nearby and she employs a "girl" to look after her youngest (aged 2)

at home while she's out at work. She has saved up and got electricity for

her home but all her water must be fetched from a neighbour's. The house

she works in is a 4 bedroomed, 2 reception roomed bungalow with 2 showers,

a bath, 5 basins/sinks and 3 toilets. That sort of discrepancy in wealth

upset me greatly especially as Florianna did not know how she would ever

get a tap of her own."

Next, Kate's place:

"I visited a centre for 70 (mostly abused) homeless children/street boys

run by Kate, the fine young Oxford graduate of medieval history or some

such

whom I had met at Tarangire and whom I have described as one of the

Admirable Characters I met along the way. I was apprehensive of how rough

these kids might be, silly me, they were like kids anywhere. They ran and

jumped with excitement at our visit, eager to show off where they slept now

they had a mattress and a floorspace instead of the bare ground to sleep

upon, eager to show off their woodwork where they had built cubby holes to

house their meagre collection of spare clothes, eager to show me the fire

in the tub in the kitchen where their beany stew was cooked for lunch (mum

said it was delicious).

Some dawdled around me for several hours, others went to play footie. The

football was a rolled up newspaper, the football ground a patch of dust,

the feet bare, the fun fast and good-humoured with small and large boys all

playing together. We saw the school room and the sickroom, meeting boys in

each, boys who wished for quiet, and we admired drawings and saw their

metalwork. They are all being taught skills by being involved in the

building of the centre, painting it, laying concrete, making desks etc.

There is a cosy seeming woman who acts as a mother figure and some older

young men. I sat and talked to some of the boys with Kate acting as

interpreter. Some had never seen a person like me before and all the usual

questions popped up like how do I communicate, do I wish I could walk,

what's my favourite subject at school. I became very very hot and asked

for my cloth which I kept wet down my back between me and my plastic

covered wheelchair to be soaked as it had dried out. There was no water

available. All the water had to be fetched from the river using a handcart

and yellow plastic containers. There was not a drop of water available

till they'd made another trip to the river, not a drop stored in a complex

housing 70 kids. There was a computer in the office, used in fundraising

for the centre (it's funded from donations from the UK). But no water.

Nothing brings home the poverty of a country more than this sort of thing."

And Mollie in Dhaka:

"I visited the computer room and the roof terrace next the cafe but felt

impatient to be off. Shahi had suggested visiting some young friends of

his, 15 year olds living in the slums who 5 years ago he had got to know

when he gave them cameras and the means of marketing their photos so that

they could escape child working, could tell their stories, change their

expectations and horizons. Shahi is another Admirable Person.

We drove for maybe 3/4 of an hour to another part of town. The roads were

narrower and dustier with more trucks and fewer buses and just as many

baby-taxis and rickshaws and pedestrians. We turned into a side road with

low buildings on either side and almost immediately stopped in the middle

of the road. People were greeting us. We must be here. By the time I was

out of the minibus there must have been a hundred people gathered. I was

pushed across an open drain and through a low gate in a wall that adults

had to duck to enter. We were immediately into a yard. Opposite and to

one side were one storey buildings. Mollie welcomed me to her home. I

went inside. Her home. One room maybe 10 feet x 10 feet, dark, one small

window. Most of the floor space was occupied by a bed that was of hard

wood with no mattress. People crowded into the room. At one point there

were 30 of us in the room. Mollie shares this home with her 4 siblings and

her 2 parents. They all sleep on the same bed. There is actually quite a

respectable air of tidiness about it. A neat shelf with cooking pots and

a cupboard with cups and plates, a shelf with books, a small table that

could be used for doing one's homework, racks with clothes hung on them, an

electric light and ceiling fan.

What it lacked of course was a kitchen and a bathroom. Cooking could be

done out in the yard. It was not at all clear where food was stored, maybe

it's not, maybe it's bought each day. We had seen the drainage, just an

open ditch. I inspected the water supply, a concrete well, quite big,

maybe as much as 4feet by 4 and 15 feet deep, totally open for any passing

person to fall into and at the bottom green murky water supplied from some

source I didn't quite understand but not a straightforward and independent

well. Did she think it fair? No. Was it down to luck or was it the

result of bad management that she lived like this? It was nothing

unusual, it's just how the poor people live. Of course she'd like a tap,

or wow, a bathroom. When Shahi's partner rang on the mobile, Mollie chatted

happily with her, at ease with modern technology. She goes to school, able

to now she has another source of income to help her family out. She is

quite a political animal with a well-developed sense of social injustice,

quite a young journalist, writing material to accompany her photographs.

She was doing a story on the street children who live down at the railway

station. Her first story had been on the death of a child labourer in a

fire, a child she knew personally. She photographed me. She and her

friends asked all the usual questions about my disability. They are happy

to correspond with me. They speak just a bit of English. They served us

Fanta and biscuits and her little brother Babu gobbled as much up as he

could in a way entirely reminiscent of my small cousin Stuart. These were

people not unlike my own family. My dad's family didn't get an inside

toilet until after he'd gone to Oxford. They weren't rich but they were

hard working and respectable, they weren't eccentric but part of a huge

number of people who still shared facilities or had rather rudimentary ones

back in 60s Britain. Times change. How long will it be before Mollie's

family has adequate water and drainage?"

That

> came about because of the magazine, right?

My mother has always taught me to appreciate nails in horseshoes, and my

screensaver reads "horseshoes grow from here where I am singing" because it

seems a more useful model of the individual in society than little acorns

etc. To follow on from this and answer your q, the sequence of events ran

thus: last July I sent out a press release about my webzine. In August I

got an e-mail from someone saying that they'd seen the review in The

Independent and wondered if I'd consider applying for an award. In fact I

was considerably more interested in the fact I'd been reviewed in a

national daily, but after my summer hols, I checked out the awards scheme

and discovered the prize was a considerable quantity of dosh, all the

prizewinners went to Oz, and the entry form was simplicity itself. What the

hell? In spite of a life-long aversion to exams, competitions and testing,

I applied. The rest of the story of how my trip came about, I've written

above.

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

"HOSPITAL

Memories crafted from jagged emotion craft a horrid inarticulate jarring

jumble of this and that and I veer away. I was ill and I didn't want to be.

I should be elsewhere. I should be in a sunlit wondrous happy place, the

stuff of dreams for mony a boring day. I should be being applauded. It is

the day I get my prize.

I sat up in bed suddenly

Eager to not be as ill as I felt

I looked at the doctor who said I could not go

She looked at me

She listened to my really rather fine techniques of persuasion, my

passionate soliloquy and she completely ignored everything I said

She declared me a Public Health Risk

I lay limp with shock

Everything I had ever felt left me. I don't know if you know the feeling. I

wasn't me. I left me behind. That was me on the bed down there. That was

me.

Where?

What?

Who?

People came and went, pleaded with the limp body.

I didn't reply, I wasn't there. The gulf that existed between me and my

body scared me and could not be bridged. Rather alarmingly my body was

wheeled out of the room and I felt as if I was chasing along behind it

bobbing like a balloon on a string.

Endless sterile corridors.

Uncanny quiet.

Then a total absence of memory, of any feeling at all.

Into the dark came a horrid pummelling, then my mother's far distant voice

telling me that I had been awarded 1st prize. Irrelevant. Blot her out. I

was aware fleetingly that I wanted to die now this very minute but no idea

why and I didn't anyway...

I didn't wake with a startle. I lay listening. I felt quite smothered

underneath a fluffy goo of heavy comfortable sleep and it was a very very

long way up to the surface but I was floating ridiculously irresistably up

without any control or care. When the time came I opened my eyes knowing my

mother was speaking to me. I was my ordinary self. Being my ordinary self

made me concerned because my mother was not her ordinary self but a very

frightened one. There was a nurse and a doctor and I was being examined

closely. There was a thing tickling my toe. I kicked into my Best Obliging

Self to reassure mum I was me alive and well.

Surreality popped back with the brutal thrusting of my certificate and

cheque into my hands and smiling faces too soon for me to enjoy it. Exit

that menagerie. I needed to concentrate on me. I felt very hungry (well 7

days without food) and ready to face the world and not a Public Health Risk

at all. I ate toast and drank milk. It was 2 am. They let me out to rejoin

the world a very short few hours later. HJN, 30 April 1999"

In consequence 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 could cope with his

being different from me, I could cope with minor disagreements, that's

life, but my resilience evaporated as I encountered bad tempered flouncing

and it fled along with my wits out of the window when he declared that he

did not know if he wanted to be friends with me any more. My wonderful pal

Kath has done a lot of work on loving and lovability issues for disabled

people. I crashed hard into this problem, as hard on the last day of my

journey as I had

crashed on my first day into a new self by hitting the reality of African

poverty.

5 weeks in my company and I am no longer lovable, and I am not

lovable because of my disability. The incessant uncontrollable instinct

to tug at objects with my hands. The intermittent inability to stop

shrieking even though I am sweating and upset with the effort of it all,

worn out by the body's exertions that I cannot wrest control of. The time a

change takes when mum must dismantle my wheelchair, lie me flat in a

disabled toilet, manhandle my nearly 8 stone frame so as to clean up my

diarrhoea. These were reasons for walking away, reasons for complaint,

reasons for temper. These were what he could no longer

stand, things over which I have no control and never will have, these are

the intolerable things about me, these are what makes him want to ignore me

for evermore, stop being my friend. All disabled people long to be

accepted as themselves, but fear that they may not be. It is a

commonplace, not-worth-remarking-upon phenomenon that the disabled try to

fit

in, ask for "concessions" only when necessary. Some hide daily struggles

altogether, except in a shared world.

For example? I knew a double bass

player who'd had a kidney transplant but who passed for normal when in fact

the complexity of her drugs regime and so on entitled her to participate in

athletics events for the disabled. A longtime professional OT was

completely surprised by my conversation with a sales rep in a wheelchair

about managing long haul flights - he deliberately dehydrates himself. He's

afraid of being unacceptable to the airline if he explains his toileting

needs (access to a wc) and he flies regularly because his folks live in SA.

He is unwilling to undergo cathertisation as some airlines demand

(Singapore airlines wanted me catheterised but my GP said no). Or then

there's Kath

who at 12 decided no longer to wear a useless arm just to look more

normal. It

felt horrid, it prevented her from using her stump and feeling things with

her stump, and it meant an emotionally insulting assessment every few

months

as she had to parade about naked in front of a lot of men who made

decisions about her. She decided she needed her artificial leg for

mobility purposes (although she often takes it off when she's relaxing) but

that she had no use for an articficial arm. Love me as I chose to be.

Love me, love my disability.

I said earlier that Colin was special. I

did not know it then when I was 6. That's how I thought adults were. But

it isn't.

Some adults would kill me up until the day of my birth, some adults think I

should be put down even though I am alive, well and kicking, some well

publicised folk see

me as someone who is being punished for wickedness in an earlier

life, some people feel sorry for me. These people are unable to see past

disability, see the whole of me. Some people try to include me but on

terms that they lay down, some people let me in for a glimpse but do not

want the

bother of further obligation, some people want to be seen to be doing the

right thing, some people want the feel good

factor for themselves not me, some people genuinely want to help but fail

to see the whole person is just the same as them. I frequently meet

people who admire what I

have achieved, or who relate to me on an intellectual level. They do not

become my friends and they do not build sustainable relationships for me.

Those who see

only a 12 year old are spurned by me, those who want to give me treats are

absurd. The world divides into those who accept me as me and those who

struggle with this simple attitude. Of those people with whom one chooses

to have an ongoing friendship, acceptance of my multi-faceted self is an

assumption. Love me, love my disability. So how do I handle rejection

because of my disability? How do I laugh that off? How do I pretend that

hasn't happened? Do I owe loyalty to a best friend who raises such

fundamental questions as he walks away? Am I disloyal to my old friend if

I discuss these issues? Am I honest about my journey if I ignore my

emotional experiences? Am I writing gloss or grit? Grasp the nettle? Get

hurt.

> Hero, I know these questions are all over the board, rather

> directionless.

> But I'm trying to just start a dialogue about you, your struggles,

> accomplishments

> and how you would say you've surpassed your disability and your plans to

> continue doing so.

>

> Anyway, I hope that at least gets us started.

>

>

I hope it all gets us nearly finished as well. Don't send too many more

questions! Are you having any pictures or is it just words? There is, for

example, a photo of me with Kofi Annan inscribed "To Hero Joy Nightingale,

I wish you every success, for you have a lot to offer. Kofi Annan".

Anyway I hope I've done all right for the moment. You'll probably tell me

that you were going to write 200 words and I'm far too long winded and

you've far too much stuff now!

I look forward to hearing from you soon

cheeribye

Hero.

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