5. Jacob & Cerebral Palsy

Jacob started at my school in Year 9. I taught him English in Years 9 and 10. This year, he completed Year 12. He communicates by means of a computer that translates his entries into text and into speech. It is a very slow process. He was granted additional time to complete the VCE English examination – over eight hours. He didn’t finish the whole paper. He didn’t complete his final answer – he was too exhausted.

When I spoke to him  just two days after his VCE English exam, he was feeling very good. He typed me a message:

“Ten years ago the principle at my primary school told my mum – he’ll never complete VCE.”

Well,  Jacob showed him! Showed us all.

In 2013 Jacob wrote a poem about what it was like to have cerebral palsy. When I read his poem, I was deeply moved, and wrote a response. Jacob’s poem and my response are reproduced below.

 

 

NO, IT’S CALLED CEREBRAL PALSY
Jacob 

Sometimes
I get called names
Retard
Stupid
and
Dumb

I get upset
they don’t know me
why can’t they understand?
it’s called cerebral palsy.
when I go out in my wheelchair
people cut in front of me
they blame me if I crash into them
they mumble and mutter under their breath

and I say
it’s called cerebral palsy
my fine motor skills are not as good as some
when I do something
people say it’s crap
I say I can’t help it
it’s called cerebral palsy

 

He reckons that it’s called Cerebral Palsy
Barry Carozzi

 

I’m not boasting, I’m just telling it as it is:
On a good day I can write two thousand words in an hour.
It’s true. A thousand words in an hour is easy peasy for me.
I could just about do that with one hand tied behind my back.
I suppose I take it for granted: this word and sentence writing thing

For Jacob, every word is a battle
It’s not that he hasn’t got the words
Oh, he’s got them all right
Read his poems, and you can see:

This kid knows how to write
Not only that, he says things that make you sit up and take notice.
He writes from the guts, from the heart, from the mind.
But I also know that
every word is a battle
between
an all too capable mind
that’s as sharp as a barrel full of tacks
And arms that won’t follow instructions, and fingers that won’t listen,
Won’t do as they are told.
They wave around like fern fronds in a hurricane

And, oh god, the effort it takes to complete even a single word
He reckons that it’s called Cerebral Palsy
I ask him a question, and wait
And wait
And yes, I can feel impatience rise in me
Like a cobra from a basket in an Indian marketplace

So I have to tell myself: No, just wait.
Because I know that when the words come, and when the sentence comes
And when the poem comes
It will be something worth reading and listening to
And sharing

And yes, I can feel Jacob feeling the impatience
Only it’s worse for him
I’m only waiting to hear what he has to say
But he
He already knows
Has known for a long time
The words are all there, already formed into sentences
And he is sweating with the effort of getting those fingers to go where they have to go

Sweating with the effort of getting those fingers to go where they have to go
So much he wants to say

He reckons that it’s called Cerebral Palsy
I read his nineteen poems
He says: So I didn’t get up to the 25 poems
[As if he needs to apologise]
And he says: I don’t like doing poems
But he’s done them nonetheless
And he’s written:

So I have finished my novel

 And the thing that slowed him down
is called cerebral palsy
But I look at his poems and I reckon that should be called:
An incredible achievement
Something to write home about

Because this St Kilda fanatic, this Manchester United fanatic,
This boy in a wheel chair
This sad and funny and smart kid who is a poet
[Though he’ll probably hate me calling him that]
Who plays cricket, does karate, loves his sister, loves his brother
Loves his mum and loves Gam and Farve
He has written nineteen poems
Against all the odds and the obstacles
Not making excuses
Just explaining why it takes so long

Just working so hard to do what seems so easy to the rest of us …
And he finished his verse novel

He reckons that it’s called Cerebral Palsy
I reckon it’s called: guts.
I reckon it’s called: courage
I reckon it’s called: determination

And we, who have seen this happen, should never forget
What it took.
And I reckon it’s called inspirational

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