As a war time child it never occurred to me that
night was the time to undress and climb upstairs
to bed and to sleep.
For my generation it was the time to
dress up warm, walk to the end of the garden,
climb down a ladder and sit out most of the night
listening to aircraft droning overhead and
explosions tearing London's docklands apart.
But as I had known nothing else, I
was not afraid and neither did I understand that
life could or should be any different.
In much the same way I know a woman
who was born deaf and went through her entire
childhood believing that the world was a silent
one and that everyone lip-read.
They are situations to which, I
suspect, a brilliant young woman is readily able
to relate.
From her earliest years Alison Hale
has seen the world around her from a totally
different perspective to the rest of us. Hers is
a world swirling with multicoloured blurs, a
deafening cacophony of overwhelming sound and an
unintelligible jumble of symbols which for most
of us form the written word.
But for Alison they have been as
meaningless and indecipherable as language from
another planet. It's only in adulthood that she
has been able to painstakingly unravel them to
make sense, but even today reading is a slow one-letter-at-a-time
affair.
Bravery comes in
many guises, but the particular brand which
symbolises this young woman is rare indeed.
Alison lives in constant turmoil triggered by a
complexity of disorders, the best known of which
is dyslexia. Yet in spite of them she has
laboured away through month after month of
physical pain and mental torture to produce what
has to be the most graphic book about a world
which is as divorced to that known by the rest of
us as it is possible to be.
Not only has Alison had to battle
with what has to be the worse form of dyslexia
possibly ever recorded, but with the effects of
it being chain-linked to Attention Deficit
Disorder (ADD), and autism which manifests itself
with even worse perceptual difficulties over a
greater range of senses and systems than dyslexia,
with imagination impairment, social communication
interaction and often repetitive behaviour.
Today, at the age of 29, Alison wages
a daily personal battle to impersonate normality
to enable her to earn a living as a computer web
designer and carve a niche for herself in our
alien world.
Her book My World is not Your World
is one of the most disturbing I have read,
because I had no idea anyone could experience
such torment, and because as a mother my heart
went out not just to Alison but to her parents.
Their bewilderment, frustration,
exasperation and pain sprang from the pages as
graphically as Alison's fear, disorientation and
sense of total isolation, rendering me impotent
with a sense of defeat in the knowledge that
little, if anything, can be done to help or even
to attain a modicum of understanding.
"I wrote the book" she said,
"because I wanted people to understand that
there are other ways of perceiving the world, and
in the hope that it would help people like me who
have brains that don't translate information
properly"
But what does that exactly mean? How
DOES Alison see her world as opposed to how I see
mine? Describing her first day at playschool at
the age of three is harrowing: "...nobody
seems to notice my terror as the noise consumes
me and the multicoloured blurs rush past me
screaming, shouting and sometimes knocking me.
The only reassuring safe reference point in all
this chaos is fast moving towards the door. Why
does my mother insist on leaving me here?...."
".....we are given this large
sheet of glaring white paper on which to paint. I
know that to remove this painful glare all I have
to do is to paint the whole sheet of paper black.
For some reason nobody including my mother, ever
seems enamored with my completely black paintings."
Primary school proved to be a bigger
nightmare. Alison's lack of co-ordination led her
to continually falling over and she wrote:
".....the only good aspect about grazing my
knees is that I have to go inside to the school
nurse. It is quiet and peaceful in her office.
Many times I took the drastic measure of cutting
my knees with my fingernails or some stones just
so that I could go into the peace and quiet....."
- an ominous forethought to her anguished teenage
out pourings of: "My Grandfather often says
'school days are the best years of your life'. If
this were true I am not interested in living,
there would be no point. I have no way of knowing
how to cope with this total isolation and no way
of communicating my predicament. The older I
become the worse my life becomes, because I
cannot interface between 'my world' and 'the
world'....
".... would it not be better to
simply end my misery now? Surely there can be no
point to my useless and hopeless life? I seem
unable to make any proper contribution to society
and find it hard to imagine that I ever will.
Perhaps the creator of the universe had a warped
sense of humour....."
Today there is a general consensus
that the main characteristic of dyslexia, is an
inability to recognise words and simultaneously
translate them into something of meaning,
resulting in reading, spelling and grammar
problems.
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When
Alison started school the word dyslexia was
seldom heard and when it was it was assumed to be
a condition dreamed up by pushy middle class
parents to cover their embarrassment at having
produced a dim witted child.
The fact is that a very high
proportion of children suffering dyslexia also
have a high IQ so enabling them to cover up their
feelings of non self-worth and very often the
condition itself for years.
Only an highly intelligent child for
example would wonder, as in Alison's case,
whether it's the black symbols on a page which
must be read or the white areas in between them.
She recalled that at primary school
age reading was a total mystery. "Should I
be looking at the black bits that disappear and
then reappear or the white bits that also
disappear and then reappear?" she asks in
her book.
"I have asked my teachers 'what
should I read?' But I never manage to find a
satisfactory answer. They never seem to
understand my enquiry."
Personal relationships were
excruciating. It was also impossible for Alison
as a child to be able to connect with family
members - her only stable reference points -
unless she was able to associate them with a
characteristic or wearable item like, for example,
a watch.
This was because she had and still
has difficulty distinguishing people from the
constant blur their movement creates. Facing me
she confessed that she was able to see my
features even although they tended to merge
together and then apart. The remainder of my body
filtered away into a blur of green (my overcoat).
As a small girl she was unable to
recognise her mother other than by her hair style.
When her mother's hair was cut Alison's isolation
was complete. She thought that her mother had
disappeared and that she had been abandoned.
"My father planted a kiss on the
cheek of the lady masquerading as my mother,"
she wrote. "My father must know about the
deception, he must have trained this lady to act
like my mother so that the rest of us would not
notice. This is terrifying. I think it would be
unwise to let my father know that I realise what
is going on, because he may replace me in the
same way that my mother has been replaced!
"Hopefully my real mother can
come back soon. I hope that they do not expect me
to like this intruder..." - the desolation
of that little girl can only be imagined.
Alison was laughed at by her
contemporaries, shouted at by her teachers and
academically overtaken by her younger sister to
such an extent that her sense of self worth
plummeted to nothing.
She covered up her
isolation with an application of logic advanced
way beyond her years, a mischievous kick out of
getting one over on her teachers so proving to
herself that they were not as clever, and
outbursts of classroom disruption. In short she
was a teacher's nightmare!
"I would like to see teachers
trained to spot dyslexia as early as possible so
that the child is passed on to experts,"
says Alison. "When I was at school I was
considered to be stupid. I knew that I wasn't and
I set out to prove it."
She left school at 16 with GCE (General
Certificate of Secondary Education) passes in
maths, English, European studies, music, German,
physics, technical drawing and geography and an
electronic apprenticeship with an international
company.
She went on to pass her BTEC Higher
National Certificate in Electronic Engineering
and won a place at York University.
"I am now truly alone," she
wrote when her parents settled her in on campus
and left for home. "I find it difficult to
walk along the corridor without banging into one
wall and then the other. It is as if the corridor
shrinks and moves...
"....the noise in the
accommodation block is distracting me.....everything
mingles together in my mind: sounds, smells,
sights, my work. How can anyone concentrate in
this chaos?.....
"The sun steams through the
window, the brightness is blinding and very long
spikes of sunlight come out toward me from places
where the sun hits shiny surfaces....
"The carpet and duvet cover in
my study room is highly patterned, this causes me
to see a whirling mesmerizing mess, which hurts
my eyes.....the only way I can deal with this
torture is to build a wall of logic, build a
mental strategy for coping with 'the world'"
Eventually Alison, on line for a
first class honors degree, gave up the struggle
dropped out and returned home.
And what about the future? A flicker
of a smile crossed Alison's face. "I want to
get a PhD but that's impossible without a degree."
What about doing an Open University
course, which could be taken on in the sanctuary
of her parents' home, I suggested.
Alison gave me a
long contemplative look which appeared to pass
around me - to a swirling mass of colour perhaps
of which I was unaware? I had thought that during
our time together she and I had made definite
contact and that I had started to penetrate and
understand her world, now I wasn't sure. I left
feeling suddenly very very sad.
Josie Stephenson
Brentwood Gazette
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