18 January, 1999, continued

 

I think there is quite a lot of curiosity about disability and what it's like. I have written elsewhere about my emotional attitudes and adjusting to frustration. I have had to write in some detail about my physical needs in order to stay with strangers on my forthcoming trip. I am pasting my e-mail up here so that you may understand some of my limitations.

 

dear Kim

 

Here are my answers and my questions:

 

>

> You say that you prefer

> the company of adults but are going to be hosted by a class of your age

> group. Will this be comfortable for you?

 

Not very. I have very little in common with children my own age. I am not

used to their company, not having been in school for 6 years, but I get on

just fine with my brother who is 14. It depends on how much time I am with

them, and I am sure they have very interesting parents. I can't always

keep up physically either. The able-bodied get up and go with much more

spontaneity than I can muster, and they rush from task to task when I feel

as if I've only scratched the surface. I'm sorry if this is a spanner in

the works. I am interested in what the trip up country involves - where

to, why/what is the purpose of the trip and whether not being around for

the whole time would be a disadvantage.

 

 

 

>We will endeavour to put

> together a wide range of experiences for you. As we now have a green

> light to proceed, I am scouting out what is available in your time frame.

 

> I will apprise you and you may comment as you see fit. Give me a few

days

> and I will provide more details.

 

Goodee. I want to go out in a boat beyond the city if that's possible - my

guidebook recommends the Tongi but I'm open to suggestions from local

experts. I'd also like to hear some live classical music of the Indian

tradition if that's possible and talk to people like your wife about

development. What other ideas have you got?

 

Other rather basic questions I have: what is the temperature/climate

likely to be like? What about clothing? What is appropriate (socially and

climatically)?

 

 

>

> One thing that is lacking from all that I know is the actual details of

> your needs. My impression is that you are confined to a wheel chair and

> are unable to speak.

 

Quite right.

 

>You seem to be able to use a computer, ride in a

> kayak, jump from an airplane, and canoe. All of this suggests some kind

> of physical ability. Basically, I am not sure of your physical

> capabilities.

 

I am impossibly useless with my body, being unable to do anything all

by myself. The important thing for you to realise is that this includes

communication which is A Very Sensitive Issue for me, because being

dependent on hands-on help makes me very liable to be viewed as some sort

of fraud. I am bringing with me a short letter of introduction from my

clinical psychologist because the whole business of meeting new people can

be fraught. This is because I am not disabled like other disabled people

and have a peculiar combination of ability and disability.

 

When I am lying on the floor (or bed) I cannot lift up even my head, cannot

roll right over or scrabble upwards at all. I am a beached whale, whether

prone or supine.

I have a very surprising sense of balance given my lack of physical

coordination and can sit on a walking horse without help - but I need

walkers on either side to prevent me tumbling if I lose my balance. In 10

years of riding I haven't fallen off yet and have only had to be caught 2

times. My sense of balance allows me to sit in a canoe because the small

cockpit prevents me from falling in any direction, but I cannot hold onto

or wield a paddle - I go out in a double canoe and only for short times

because being hypotonic it's very hard work maintaining my position. I'm

not sure why you think I've jumped out of an aircraft because I haven't and

I'm not sure if I'd like to. My mother thinks me intrepid but this may

just be relative to her. I also go in the hydro pool twice a week normally

which is gloriously gorgeous: the water is very warm and bath-like so as

not to tense motionless limbs. I have 2 helpers to ensure I don't sink and

to both facilitate my small voluntary movements that a trained carer can

feel when working hands-on and to ensure that I am moved through the

complete joint ranges and given a good stretching. It makes me sleep all

afternoon afterwards but at the time I feel fitter and free-er than any

other and tinglingly alive in my whole being, a united entity not a brain

inside a useless shell. My mother has had to learn computing skills as my

communication has expanded and overtaken the usefulness of spiral bound

notebooks. I direct her in what I want. She is my slave, and quite a nice

one. She is 44, prone to horrible migraines and travel sickness and has

no satisfying career because of me. She is however Chair of a respected

local charity and has been responsible for securing funds that now allow

them to employ 4 advocates to help other parents of kids with SEN. She

graduated a very long time ago from Oxford University in some mish-mash

degree that involved social and biological sciences. She is far more

practical than academic. I must not forget to tell you that she is not

English but Scottish because Scots are touchy about these things and she

gets so very homesick sometimes - I think that gets worse as the Scottish

Parliament approaches.

 

>For example, can you sit up in a chair by yourself?

 

Depends on the chair, but I can't be safely left unattended.

 

 

>What

> kind of a vehicle is necessary for transport?

>

 

At home I travel in a specially converted camper van and in my wheelchair

(clamped down to track in the floor, and with a huge 4 point selt belt also

clamped to the track). During the last fortnight my mum and Carol, one of

my family support workers - I have a team of 3 who assist and support mum

in basic care and domestic tasks paid for by the Social Services - have

been sewing me a nice denim waistcoat with a big lot of velcro on the back

and some straps and a velcro pad to fit around an ordinary car seat (estate

or front seat, you need to tie the straps at the back of the seat). I

tried out this contraption last Thursday. Getting me up into the van

proved quite a lift for two adults and when I was there I chortled

uproariously and out loud (unusually) and waved my hands about in a rather

uncontrolled fashion out of sheer excitement. Since mum was driving this

didn't matter one jot - she is both used to me, able to communicate with me

even while trying to drive and an immensely good driver - she passed an

advanced driving test after examination by a police driver when she was

still at Oxford and takes both road safety and first aid very seriously.

Whether I'd be safe in the front seat of a taxi is another matter. If the

traffic was only moving slowly, and I was in some way tied down a pick-up

(eg for a short rural trip) would be ridiculously fun and maybe acceptably

risky. I'd like to have a ride in a rickshaw. A school minibus might also

be possible.

 

The other transport problem is my wheelchair. It is not a canvas-backed

folding thingy but a monstrous 33kg multi-positioning doodah (not of course

motorised because I can't manage that). It can be taken apart a bit or

stuffed whole into a capacious estate car. If my new welly-boot

wheelchair is ready this week then it may come too. It will be the third

model (I grow!) and allows me to bounce up and down kerbs and rough ground,

get through sand, up and down steps (as in Venice bridges) and paddle

because it is a 2 wheel rickshaw style concoction of my mother's that is

much lighter in weight also than my ordinary NHS chair but posturally no

good for a long time and therefore no good as a replacement for it. Maybe

that's my mum's next task. The previous models have not folded at all -

it's been hard enough finding anyone to build them, but this new one is

supposed to take apart in sections.

 

I usually also use a standard ambulance carrychair on staircases, eg when I

visit friends who live in London. This is carried by 2 people, 1 fore, 1

aft. If I bring my cheeri-o chair (welly boot chair), I will probably NOT

bring a third chair although this may be worrying as the cheeri-o chair is

wider and will not necessarily fit domestic staircases, but I can't travel

with everything can I? If a carrychair could be borrowed from anywhere

that would be excellent, but I appreciate that Bangladesh is not London.

The alternative may be to carry me up flights of stairs (if I need to go up

flights of stairs) on a dining-style chair. We are carrying out a test on

this as soon as ever dad comes home (yes it's Sunday afternoon and he's at

work).

 

> You are to be accompanied by your mother and another assistant. Is the

> assistant male or female? I presume that the assistant needs to be

lodged

> in the same location as you and your mother. Can you sleep in a regular

> bed? How many bedrooms are needed for the three of you?

 

We will be accompanied by my friend Tom Uglow whose father works as a

lawyer at the university and whose mother is the well-known biographer,

Jenny Uglow. Tom

I first met when he was Head Boy of the local boys' grammar school (that my

brother now attends) and I was a snip of a 7 year old. When I look at

small children now, it amazes me that Tom, and Sarah, then Head Girl of the

girls' grammar school, who introduced me to Tom, and who also remains a

close and dear friend, bothered with me at all, but they have for years now

taken me seriously and included me in various ways in their lives. Sarah

has graduated from Bristol where she read Drama and she's just finished a 3

week run of a one-woman show in London after runs in Bristol and at the

Edinburgh Fringe. She wants, with her producer/director friend Tamara to

put on a public performance of some of my poetry. But that's all now on

hold now I'm going round the world.... Now back to Tom: Tom went off to

Oxford and read Fine Art. I had a wonderful 3 years zipping up and down

every term or so to see him and visit his exhibitions and his friends.

After graduating he went to Zimbabwe for a number of very unhappy months

and came home ahead of schedule and got work as a cocktail barman. He is

now at a London college whose name escapes me doing a Masters in Book Art

and has been given special permission by his tutor to take the time off his

course to help me to realise this trip. He is by nature easy-going and

well-mannered. When he was at Oxford you could see him coming from half a

mile away, he stood out from the crowd of other New College students,

because he wore bright colours mostly purple and never jeans and a sports

jacket. Then he dyed his hair blond and started wearing black clothes all

the time. He's being very boringly conventional now he's 23. He's got

instructions to help mum with currency exchanges and the finances on the

trip, and with exercising and lifting me about. I expect he'll gently

mould himself into a Nice Useful Person. He's useful enough at jumping to

to fetch things and is willing to sleep on sofas or floors if needs be. I

am very very pleased he is coming. Noone felt it was a good idea for mum

to have sole responsibility for me for such a long venture because my care

can be 24 hour round the clock stuff and a second pair of hands that knows

us and our funny little ways is most excellent. He'll be there to help

when I have fits, he'll help to explain things people are always curious

about, he'll (I hope) help to feed me, he knows how long things like

getting me up and ready can take, he'll share the responsibility for

recording the trip photographically (mum's hands will be too full of me

nattering sometimes and we do want to take home some sort of pics) etc etc

etc.

 

Tom should be under the same roof or he won't be much help to us but my mum

would get embarassed if he was in the same room. However mum and I can

sleep even in the same bed. At home I have a specially wide and low bed

that mum made for my 4th birthday presie (along with an identical smaller

one for my dolly) so that I don't fall out if I wriggle about or throw my

legs

around in the night. Mum needs to sleep close by me (or Tom does) so that

if I am sick or have a nose bleed or some such I get attention. At home

Mum and dad sleep in an adjoining room with the door open and that works

well enough but on holiday I usually share a twin bedded room with my

brother with his bed jammed up against mine so I can't roll out. Mum

usually turns me at least once a night.

 

I get epilepsy quite a lot of mornings -myoclonic jerking stuff not grand

mal or petit mal seizures - especially when my hair is combed. I hate it

and it lasts up to 20 minutes

and if it's a bad one I sometimes need a sleep afterwards. I can easily be

safe having a fit if supervised by my mum in my wheelchair in a legs up,

tilted back a bit position, although it's more comfortable to be cuddled on

a sofa. I do not lose consciousness and can still even eat and communicate

although usually I'd rather just try to relax and sail off somewhere in my

imagination where there are no fits. Mum does a relaxation exercise with

me that takes me to the sunny Hebridean coast I love.

 

 

>Are you

> beginning to see my ignorance of the situation here? Quite a few details

> need to be worked out on this end so that proper housing, diet and

> transport can be arranged.

>

 

Diet: We are all vegetarians. ie Tom is sometimes and isn't sometimes and

I can't presently recall if he is at the moment or not, but mum and I are.

(O mum's name is Pauline Reid, she's never adopted dad's surname,

apparently that was common enough that vintage of Oxfordy person, although

they did get married - if you call a registry office do a real wedding). I

can eat most things not too badly - another big difference between me and

cerebral palsied persons with no speech - I don't need my food mashed or

liquidised, but I have had to learn how to open my mouth and chew and

swallow. For years I had to be talked through the process and looked thin

and frail with my little stick-like legs but since I turned veggie 41/2 years

ago I've got robust and chubby and very adept at letting food be shovelled

in. (I have to be fed and wear a bib but I don't normally dribble and I

rarely have choking episodes or spluttering though I used to splutter every

time I drank.) I particlarly enjoy Indian food, or at least the sort on

sale in our local take-away restaurant, and pasta. Pizza is OK and mum

makes a mean

veggie crumble and various bean stews called gunges and veggie shepherd's

pie and so on. I like nearly every vegetable I've tried. We do not eat

fish or seafood but we do eat eggs and dairy produce. I am sometimes too

excited to eat anything. This happens mostly

on holiday! or when I am anxious to get on with something more exciting

than eating or when I have an appointment and feel rushed.

 

Mum doesn't drink alcohol and indeed rarely drinks tea and

coffee, her preferred beverage being freshly boiled hot water. (yuk!).

Drinking has been a big problem for me - and I still only drink cow's milk

(pasteurised) or longlife orange juice (eg Del Monte) although I am

practising drinking cold water. I have not learned how to drink fizzy or

hot drinks, although I can sometimes manage a sip or two. Mum tells me I

should acquire a taste for flat 7up but I'd rather not. When I am ill with

a fever or a cold I can usually be depended on nowadays to drink a

home-made variety of dioralyte that is made from safe water, sugar, salt

and bicarbonate of soda. Generally we only travel around with us the last

of these ingredients and assume that any household has the rest. I also

carry paracetamol suppositories which can be difficult to obtain. It's

opening my mouth that's hard in hot weather or when I am ill and there was

one horrid year when I was 6 or 7 when I was hospitalised 4 times to be

hydrated on a drip. I say horrid because it was, in spite of daily visits

from my amanuensis so that I could keep writing out my music, but it was a

good deal less horrid than being ill and weak for a fortnight and not being

able to spell at all as I got more and more dehydrated and incapable as had

previously happened even with minor infections. 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

as I can never spend enough growing time in my leg splints or my standing

frame - but I disagree with her, I feel as if I grow more determined and

stronger and more resilient each month that passes. I was much upset when I

developed epilepsy and thought I would die. My legs buckling under me were

at first deeply distressing but now I know it's not surprising. I am much

more aware of the repercussions of disability, the added complexities that

are just that, added complexities I can handle, and in handling them, I

cope

with so much that I am strong. I learn far more than many adults. I have

a window on a world of disadvantage but also meet other people both

able-bodied and

crips who feel grown too by their experiences rather than restricted by

them. I cannot imagine what sort of brat I'd be if I had not got stuff to

cope with.

 

Notwithstanding all this brave talk, it is sometimes overwhelmingly

difficult, and I cannot often bear to think of my future. I

am very very different from every single person I have met and that is

sometimes the stuff of deepest ferocious despair. I have been at least

twice clinically depressed, but what depresses me most is not my condition

per se but the attitude of people towards me. In particular I am bitter

that my LEA has left me unresourced (unjustly in their own eyes as well as

the Ombudsman's) for over 4 years and that the agreed remedy has not been

acted

upon. The result of promises not being actioned is my being subjected to

scepticism because of my dependence upon my mother for communication, and

fear because I do not readily believe people will be nice to me. When I

was 4, 5, 6 I could communicate fluently through 4 different people and was

labelled gifted and a grammar school was sought for me in spite of my

tender years. Although the LEA funded my music writing for 2 years and

bought me a computer, it does nothing to comply with the law which says

that I should have 2 enablers provided for my care and communication and a

full curriculum of academic study as well as hours devoted to

self-expression such as music-writing. (I have a Statement of Special

Educational Needs.) 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. It is only the bureaucrats and administrators - tutors,

therapists, doctors are fine - but it saps at one's spirit so. And so much

time is spent writing letters. I wish they had built on my early success

with enablers - how different now my life would be - but you will not

realise how much it would be different and the magnitude of the injustice

done to me without seeing my idiosyncratic and implausible spelling system

- then you will understand.

 

 

> A digression. One of my goals in having you visit is for our students to

> see what can be attained if one sets their mind to it despite the

> perceived or real obstacles that may be in the way. Students in an

> International School abroad live rather pampered, mostly secluded,

> privileged lives. At the same time, I hope that you see that in your

> environment you are afforded more opportunities than a person in the

local

> environment here with the same limitations. People in the developed

world

> are the minority. I consider this the "real" world, though I must admit

> that I pamper myself as much as the kids are pampered.

>

 

Well I'm quite happy to be a role model or some such thing and I'm quite

happy to discuss things like disability rights and the costs thereof,

morality etc - even abortion. My Granny died earlier this year after a few

years of horrible Alzheimers. I have a very very vivid life in many ways

and not being confined to a classroom, I have met all manner of people. I

can confess to wanting to run a mile from some deformed and mentally

 

handicapped individuals I know, but everyone is loveable - trite but

nonetheless true and almost none more so than my Granny who lost her

ability to talk sense, was embarassing to be out with, became very

difficult to take to the toilet, was bizarre in some respects, had

difficulty in chewing and occasionally had verging on the fatal choking

episodes, had strokes and heart attacks both, and was always happy to see

me. She would try to dance as I stood in my standing frame, try to play

catch with my brother, loved sitting in our sunlit garden, and regarded a

banana as a special treat each week, o and After Eight mint chocolates.

She sang to herself a great deal, having lost her earlier inhibitions in

that respect and she never in spite of all her inabilities lost her

capacity to realise when I was talking to her and mum was speaking my spelt

out words - a most amazing feat but then she also when she was taken on a

trip out to buy shoes acted entirely appropriately as if she had scarecely

got Alzheimers at all, so I suppose she had little boxes in her head as it

were for different situations and one by one they got knocked out by her

senility and she died before the one involved in being in touch with me

clonked it. She used to come out to the seaside with us and eat Turkish

Delight while we watched the snow storms sweeping in or the sun setting or

what have you and she found the world such a beautiful place. Caring for

someone like that isn't hard, even while it's emotionally hurtful to watch

a person lose their skills and physically hard to be there for them

providing the help and supervision. Caring = loving = easy. But not

everyone can care for everyone. There has to be a fit. A empathy. I am

driven up the wall and round the twist by well meaning individuals who pat

me as if I am a labrador but who will not take me seriously as having a

brain. Marks and Spencers lifts are a particular hazard in this regard and

I would spit viciously on the dear ladies given half a chance. Nurses are

nearly as bad, but it's not confined to women, it's something that happens

in a lot of superficial encounters, assumptions are made that are quite

quite erroneous and are based not even on looks but on preconceived ideas

about the disabled. My mother hates the word disabled as it implies no

ability. If one says that I am handicapped that begins a train of thought

that I might be handicapped by my body which wants to do x, y and z.

Anyway, I am very aware of how liucky I am to be living in the UK and in a

nice middle class family. The UK does not suffer horrid diseases, has not

been at war for a couple of generations in any obviously affecting the

general population sort of way (Ireland is very remote you have to

understand), does not have hurricanes as a rule or tsunami or earthquakes,

floods, volcanoes anything that makes one realise the smudge that an

individual is, the power of natural phenomena, the lack of control

experienced by so many in the world is alien here. People expect to be

able to control their lives and find the concept of their own mortality

baffling. I look forward tremendously to stepping outside this frame and

feeling relief at jumping back in. I am very much a product of my

own place and time. Lack of control frightens me. Life on benefits

looming in front of me frightens me. Life in a state without state

benefits is too appalling to contemplate.... but I do want to learn all

about it, as much as ever I can.

 

I do think in some respect your kids (in the international schools) must be

very strangely brought up, secluded in

their nunneries as it were and without ancient Grannies round the corner,

without a social mix within the class, without a sense of belonging and

committment to the place in which they are living - seriously weird - and

it's not even like in colonial times when the countries were run by

Europeans and there seemed such certainty that development along rigid

European lines was desireable and adherance to the old culture taken for

granted. Presumably you encourage an idea of the international community

and a pluralist tolerant society with basic common human values and an

interest in and respect for the local community - all of which could lead

your kids to feel rootless and unsettled. I wonder if it does. And I have

so many other questions too...

 

> Back to the subject at hand. If you could please let me know as to your

> daily needs, it would be a tremendous help. Do you have special dietary

> needs?

 

I've dealt with that one above but forgot to say that mum has an allergy to

MSG.

 

 

>Is there possible medical help that needs to be arranged?

 

I certainly hope not. Please drive me carefully from place to place. I

have read that the major cause of medical care being needed by travellers

is because of traffic accidents

 

>Do you need rest during the day? What is your normal sleep pattern?

 

Not as such but I frequently ziz off for 40 winks and sometimes I have a

longer snooze. It is of course possible that our sleep patterns will be

disturbed by our flights. I normally go to bed around 9.30 or 10 pm and get

up at 8 am but I can easily stay up later. Mum needs a good night's sleep

or gets migraines. I usually sleep through unless I am particularly

excited or ill.

 

>Can we plan activities

> during the day and at night?

 

That would be very kind of you. The main thing is allowing time for

getting me places and for toiletting needs and so on. These have not been

dealt with but first I must say something about quiet time. I am not good

at rushing about all the time. It's not that I need quiet time about the

house particularly but I need time when I'm out just to feast from where I

am. I am quite happy to watch the world go by a bit and often considerably

more than my dad and bro can tolerate. I am the sort of person eg who

rushes through an art gallery with scarce a glance until something catches

my beady wee eye. Then I will sit for half an hour or more in front of

that one painting and then want to leave. Sometimes I find music is too

overwhelming and don't want to sit through all the pieces in a concert (but

now I usually attend rehearsals which are not at all the same). Sometimes

I just sit and listen to the hums around me - whether that be conversation

in a foreign-speaking clime or a quiet rural solitude. Other times I

"talk" a lot and have very very long conversations, made longer by my

spelling taking longer than ordinary talk.

 

>What can you think of that we should know?

 

My spelling is fast enough to be conversational.

I'll try to be good and nice.

 

 

> Right now my thinking is to plan a regular day of activities for each

day.

>

 

Fine. It may be nice to see something of everyday life - go food

shopping,eg.

 

> May I also be in contact with your father or mother? Do they have an

> email address that I may contact them?

 

Yes you may, of course. My dad's e-mail address at work is

D.R.Nightingale@ukc.ac.uk. He is Pro-Vice-Chancellor. I'll tell him to

look out for a missive from you. O and thank you for contacting UNIS. I

have had a nice response and I have also had the offer of the Head's

bungalow in Moshi.

 

 

>

> I am excited, we are excited, and we all look forward to you sharing time

> with us.

>

 

 

I do too.

 

I'm sure that is quite long enough for the mo. I'll write if I think of

anything else.

 

love & kisses

 

 

Hero.

 

 

 

 

PS my friends call me ho, hence hojoy (which my e-pals call me).

 

PS 2. we've omitted bathrooms and toilets.

I went to the toilet in a most normal fashion from 2 till 9 years old

thanks to a toilet seat my mum

designed and had built at the local hospital. It was a two piece

flat-packing device that could be accommodated in her capacious bag and

therefore I went anywhere. I outgrew it and outgrew the ability to be

squeezed into normal sized cubicles or carried hurriedly upstairs or what

have you. I therefore now wear a thing best described as a nappy. I will

be setting off with 30kg of them! (Each packet of 28 weighs 5 kg). I am

hoping that half of them will be taken directly to Oz by the competition

organisers. By the time I reach you there will therefore not be too large

a bundle. My toiletting needs are therefore quite simple: I require from

time to time a private space where I can either be changed in my wheelchair

(slightly awkward but the normal procedure in disabled toilets in the UK)

or a clean floor space where I can be lain down and stretched out.

 

Washing is perhaps the biggest difficulty when I am away (it often is at

home too). I usually travel with shower chair (you should see the

entourage when I go for a week to Venice and reach the hotel via the

waterbus because it is level access) but I will not be bringing one. If

there is a shower I can use occasionally, so be it. It needs 2 people to

lift me into a bath but my balance is good enough to sit in one providing I

am very closely supervised, but it's not very relaxing. I often make do

with baby wipes and bed baths.

 

Washing my hands needs a bowl of water held on my lap by one person while a

second person helps me to put my hands into

the water. 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. Which leads me to the other

thing I've not said. Safety. I can be a danger to myself owing to the

wide discrepancy between brain and body. 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. Therefore I cannot be left where I can pull

anything down on top of me or catch hold of hot surfaces or electric flexes

or things that I might ridiculously place in my mouth. This is a

particularly dangerous thing because I cannot spit out or take out with my

hand stuff in my mouth that I don't want there (this applies to food as

well - my mother has sometimes to prise open my jaw and hook out half

digested food that I've suddenly stopped eating eg because the telephone

rings!) I also can't cough strongly. When might I be left alone? Well

the stunningly obvious times are when my mum zips off to the loo, often at

the same time as she washes her hands after changing my nappy. Thus my

nappy changing sites must really be relatively safe. This often means

spacious or spartan. It is also useful if there is an open space where I

can be stretched on the floor during the day at least a couple of times. I

cannot spend all my time in my wheelchair. It is just too static for

comfort.

 

Now I remember that I must also tell you about my dyspraxic gaze - when I

am tense, as in unfamiliar settings, I have difficulty looking where I want

to look and in transferring my gaze from one place to another. It is much

much better when I get used to people, but I do have several associated

problems, viz picking far away things out of the "ground", eg deer on a

hillside if they're not galloping gaily (although I can see them clearly

once I've found them), looking at things everyone finds interesting if

there's no sound cue to them (I can't look round at the crash on the

motorway if it happened earlier but if it crashes beside me I see it),

looking at books and maps when told to. People can be disconcerted when I

don't make good non-verbal communication, but it's as I said better when I

relax a bit and at home with my family and closely known professionals and

friends really quite if not normal at least quite expressive and

coordinated. ta-ra for now.

 

Flight times will follow. I arrive from Dubai on an Emirates flight and

leave on Singapore Airlines (1/2 price). The leaving flight is late at

night.

 

* * * * * * *