Thursday, October 05, 2017

#31for21 - Poetry and Connections

In 1992, I had an iron and gold standard:
Think about how it would be if Princess Dani read it.
That may have saved me from some of my more egregious errors. I was going to make others of them regardless.

Because once you realise people who rock the 21st chromosome can read and write - you have a responsibility.

And once you ask - "Why in the hell don't we read and write their poetry"? - there's a connection.

Five years later - 1997 - Rosemary Crossley wrote a chapter in Speechless called What is the product of 3 times 21?

Because I was a lightning mathematician and had other STEM interests at that time - my heroes included people like Albert Einstein and Henry Cavendish - I would have said, "That's easy. It's 63, like 7 times 9".

And the Nobel Prizes for Physiology and Medicine; Physics and Chemistry are out. And Literature tonight. We have to wait another month for Peace.

In that eighth chapter, there are three young ladies - Jan; Heather and Fiona.

Jan is the one who writes poetry.

Her family come from culturally and linguistically diverse backgrounds and their general and academic English did not then extend to poetry.

In fact people with Trisomy 21 have been writing - and publishing - poetry for at least 60 years, even before Lejeune put out his genetic discovery to the world.

It's hard to read a poem to yourself -
You cannot hear the words.
You have to imagine the sound, the rhythm. The sense is there, the feeling lost.

Imagine writing a poem without being able to read it aloud. It's like playing a record in a soundproof room -
It's going round, but no-one on the outside can hear.
If I was deaf, would it be the same or different?

[Jan, Speechless, page 132].

"Pretty; shy; slightly built". So far; so wonderful and even enviable and highly valued.

She studied at a special school for the intellectually impaired - the type that Princess Dani eventually went to in two or three years from the time I studied with her.

[...]Jan was very interested in DEAL's communication equipment. She went to the typewriter of her own accord and began typing quickly without assistance. Like most people with Down syndrome she had low muscle tone, but despite this she appeared to have few problems with her fine motor skills - she looked at what she was doing and she was able to use her hands and fingers well. All that came out, however, was a few words she'd practised typing a lot previously - mum, dad, Jan.
I wanted to see what she would do if she was slowed down, but for a shy girl Jan was surprisingly determined about her independence. I finally got her to accept some help - I held on to one end of a rod, she held the other with her left and best hand and typed with one finger. The resistance I provided slowed her down very substantially, and the quality of her output increased as her speed fell. I gave Jan a picture of a cow and asked her to write me a sentence about it. Instead she typed THIS TYPING IS HARD. I HAVE TO THINK. That was, of course, the aim of the exercise. Previously Jan had simply been repeating some overlearnt motor patterns, virtually without conscious thought.
Jan was one of those unlucky children in whom shyness and fear of failure combine to give the appearance of stubbornness and stupidity. She was so afraid of getting things wrong - afraid with good reason - that she preferred not to try them at all, so afraid of giving the wrong answer that she preferred not to speak at all. This got her in trouble constantly. Unfortunately, Jan had severe word- finding problems which limited her ability to get her meaning across and restricted her to very simple utterances.[...[

Yes. People who look stubborn and stupid are not stubborn and stupid. And Jan showed a lot of determination about her independence and autonomy. The rod might have been helpful. And what did she type about the cow?

"While I was talking to her mother Jan spontaneously and independently typed MUM DAD COW DAD IS COW. We both laughed, and I said "No, dad is a bull.", whereupon Jan spontaneously typed MUM IS COW. She then typed DAD IS and went for the B, stopped short and typed JAN, her most fluent word - the word that was most likely to come out in typing, though not in speech, any time her concentration lapsed or she hesitated. I held out the stick, she took it and typed DAD IS BOOL. It was almost like aphasia of the fingers. Gradually Jan relaxed and became more willing to work with me, and more willing to allow me to hold on to the end of the rod and slow her down.
Five months after her first visit Jan came in carrying a copy of Peacock Pie, a collection of Walter De la Mare's poetry. A number of the poems are old favorites of mine, so I read them aloud to her:
‘Is there anybody there?’ said the Traveller, Knocking on the moonlit door;
And his horse in the silence champed the grasses Of the forest’s ferny floor; ...

‘Tell them I came, and no one answered, That I kept my word,’ he said.
Jan's parents were limited in their ability to read to her because they were not native English speakers. Laura said Peacock Pie was Jan's favorite book, she'd bought it herself. Jan wanted to type out a poem from it, and while she was doing this I got some other anthologies out." 

I was discovering a lot of poetry anthologies myself, mostly gifted me from family members. The first one I sought out for myself was in 1990 during August of that year - Fairy tales and nursery crimes by Michael Rosen. Christmas 1991 I was reading The Penguin anthology of children's poems which I had bent the spine by that time.

I also was under the reputation as the form poet [and storyteller and playwright.

In the early 1990s I was the technology pioneer or one of them. With the IT facilitator's son and others.

"By now Jan no longer needed to hold on to the rod to slow down, and could type short messages with just my hand on her shoulder. When she finished copy-typing her favourite poem she typed I LIKE POETRY CAN I WRITE
"A poem?" I hazarded. Yes. And she typed
Better a mother who cannot love 
Better a car that cannot move
Better a boy who cannot walk
Than to have a voice that cannot talk.

Jan's parents were quite pleased with the poem, but I don't think they realized that Jan had written it. "

A voice that cannot talk? Yes, this is a central theme of Speechless, and of Jan's later poetry, as we will see in pages 136-139.

"Jan’s next visit was her last for the year. Again she brought in an anthology, this time one of her brother's old English textbooks, and again I went through several poems at her request. She had some poems she particularly wanted me to read aloud - she showed them to me in the index - and some difficult poems that she wanted me to explicate. One was The Ballad of Patrick Spens which has a lot of dialect words in it:
O laith, laith were our gude Scots lords To wet their cork-heel'd shoon; But lang or a' the play was play'd They wat their hats aboon.
And mony was the feather bed That flatter'd on the faem; And mony was the gude lord's son That never mair cam hame.
I could understand her wanting help!
By this stage Jan could type original sentences without physical contact, but that was sitting next to me with my reminders exerting a brake and Jan using one finger. When she typed by herself she liked to use two hands in imitation of regular typists, and as she found it difficult to control one hand it was impossible for her at this stage to control two.
She wanted to write another poem and again did so on the word processor, a machine which had plainly inspired her at her last visit.
Using a computer to write poetry is like using

Hand-made writing paper for the grocery list -

It is more sophisticated than the message.
Whatever happened to pens? No-one will ever be sold a manuscript of my work. Can I ever go back to my first ideas?
Quality presentation may hide poor content. Does the software live up to the hardware In poet as in computer?
She tired quickly, and I held her sleeve for most of the poem.
One of the more creative explanations offered by my critics for the unexpected output of people who type with facilitation is automatic writing. It is suggested that people like Jan type one or two letters at random and then their partners ‘automatically’ make these letters into a word. Having got one or two words by this procedure, the partner then ‘automatically’ completes a sentence. It’s an interesting notion, and may even be correct in some cases, but among the questions it doesn’t answer is the question of individuality. Jan regularly wrote poetry. Of the hundreds of communication aid users I have partnered over the years, perhaps a dozen have written poems while I was their partner. These have all been of varying styles and standards. Anne, required to write a poem for an English assignment, found the task extremely difficult and struggled for days to produce some passable doggerel. (On the other hand, some reviewers of Annie’s Coming Out were unkind enough to point out that Anne’s sections were better written than mine.) Why do my automatic completions produce poetry when I sit next to Jan and not when I sit next to Anne?
Because her parents thought that Jan did not fall into the category of someone who needs to work with a communication aid this was the last time they brought her to DEAL. During the next year I visited Jan twice at her special school. In June she used a communicator well, joining in a discussion involving her teachers. What the teachers said, however, wasn't encouraging. Being her own worst enemy, Jan was said to have rejected any slowing of her typing (as she had initially with me) and because of this her production at special school had been little more than her usual stereotyped utterances. She was doing some original typing, but not very much. Jan just hadn't had enough practice at independent keyboard use, and the self-monitoring techniques that I'd been teaching her hadn't been practised enough to become ingrained. The only positive news was that Jan’s teacher reported that her speech was more fluent in everyday situations
138 When I came back again in November I was shown into a meeting with Jan, her special
school teacher, and her parents. Her parents made it clear that they didn't think Jan should use any form of augmentation for her speech because "She can say everything that she needs to say." Her teacher went along with them. And Jan sat there mute throughout. She wouldn’t or couldn't speak, and we were sitting in such a position that I couldn't just bring out a Communicator and give it to her.
I argued as best I could. I told her parents truthfully that Jan was as talented with language as any child I'd ever taught. I told them that her poetry was exceptional for a student of her age, that she had a real talent that she could use only if we gave her the equipment and the skills she needed. Nobody (Jan aside) believed a word I was saying. Her father, her mother, and her teacher saw the person that they have always seen, the person that the textbooks told them that they should see. They saw a girl who was doing well for someone with Down syndrome. I was saying that Jan was not just doing well for someone with Down syndrome but that her writing was exceptional for any child, and that was not believable. Her parents thought I was sincere, but they didn't think that our "great work” could possibly extend to their own daughter. Their daughter has an extra chromosome.
I hope Jan's story has a 'to be continued', but at the moment there's no sign of it. I haven’t seen her for years. What has happened to her talent? Is her head full of poems that she can't tell anyone, that she can't type because the stereotyped words get in the way? "

Other people have developed their writing skills and identities as authors, like Peter Rowe and the Brotherhood of the Wordless in Queensland. One of their "sisters" is Lucy Blackman, whose Talking of Macbeth and Carrying autism feeling language I have enjoyed in the last five years - and in November 1997 - the correspondence with John Marsden.

The Bush Christmas poem is wonderful.

And there is Nathan Basha too.

I have seen various works on

Wherever poetry is, people with Down syndrome are.

And I am really bad at dedications, because in 1992 I had written a story called Camping Out which I really did not want to write. I paid more attention to the publicity than the dedications. The story was about two Ladybird characters called Peter and Jane and it was written in four frames.

To Maureen and Danielle, who inspired me.
That word - in the past tense - is like a stopped breath.

The Words are Sticky …they stick to my tongue, they stick to my teeth,
they stick to my voice and it’s hard to speak;
they tangle me up and make me choke,
I so want to speak and that’s no joke.
I try and I try, I push and I push,
but the words come out all jumbled and rushed.
I choke on my tongue and sometimes I spit;
I’m trying a word, but that’s just not it.
They’re cheeky and sticky, they just won’t come out,
but they seem much easier to speak when I shout.
I’ll catch them one day, when they all run by,
and then on that day my speaking will fly.
I want you to know I think, just like you,
but my words are all stuck in my mouth, just like glue.
So where is the way to unstick all these thoughts?
I hope that it’s in the Speech Therapy I bought!
[Rowe 2003] accessed 5 October 2017

There are many things that hurt us,
but most of them come from ourselves
The things that hurt us the most,
usually come from fear.
We can work against the fear,
but most people choose not to.
Most people see it as their companion and they can’t let go.
Nevertheless, it is this idea that stops us from succeeding.
The idea that we have to hold onto stuff that hurts us is crazy.
Getting rid of it is hard, though,
and most people never do in their lives.
This is because most people are afraid of facing their fears:
afraid of life, without the fear.
This includes me.
I have trouble shaking things off too,
and this is because I need to hold on to something …
and I do not yet have a tight enough hold on hope.
Good things will come though.
I am waiting!
That day is coming soon
when I will run with hope
instead of shaking with fear!

How A Bush Christmas Should Be
The sun is beating down on the hottest day of the year, the branches breaking and falling from the heat. The flies are buzzing and the dogs are panting in the shade: The Bush Christmas has come again.
We sit on the verandah, under the iron roof, and listen to the cracking and expanding of the roof in the heat. The dry ground is screaming for rain and the little lambs are bouncing around not knowing, and not caring, that it is too hot to play.
The old dog is sitting under the gum tree where he has been since last night, with his tongue hanging out and his breath hot and short. He flicks away the flies with his tail and goes about sleeping and waking and sleeping and waking all morning.
The cat has found a place under the roof and on top of the water tank at the side of the house. He is all curled up and completely unaware of things happening around him.
The children have been helping mum decorate the Christmas tree and get the house ready for the next couple of days. The uncle from out west and the auntie from down south are coming up for Christmas. The house has a bright and cheery feeling about it again.
Dad is sitting on the verandah and he is thinking how good it is to have family to share this day with him.
“I wonder if the rains will come soon?” he mutters, loud enough for mum to hear through the open windows.
“The report says it could be a couple of weeks yet, dear,” mum replies.
Dad mumbles something about the weatherman and pulls his hat down over his face. He rests his feet on the dog at the base of his chair.
A light has been making its way up the dusty road from the highway for about an hour or so. It is uncle with his wife coming to stay. He’s been singing to the country radio station the whole time – much to auntie’s dismay.
The girls have joined mum in the kitchen now and the eldest son has come out to dad on the veranda.
“Dad, do you think the lambs will be okay without water for the next couple of weeks?” the boy asks.
“Son, I think the ewes will drop their lambs under a tree and walk off if we don’t get rain soon,” he replies. “I think we need to pray a bit harder this year.” Together they ask God to send the rains soon.
Aunty has caught the train up to the nearest city and hired a car, with very cold air- conditioning, for the drive up this year. It is going to be the hottest place she’s been to for a while, that’s for sure. The flies at the train station stay well away from her because she smells like perfune and new clothes; a successful lawyer type.
The weatherman’s report didn’t count on the prayers of the bush folk this year. No weatherman could know just how many prayers have gone into this year’s rain.
Auntie’s car has pulled in just behind her brother’s Ute as they fly up the dusty road. Her city life forgotten for the moment, she drives like a real bush kid coming back to the family homestead.
They don’t see the clouds in the background through the haze that they are pushing in front of them. Dad hasn’t seen it from the verandah yet either.
The haze just looks like another heatwave haze. The clouds build and build with great speed and the cars race on toward the house, unaware of the growing shadow behind them.
Dad sees the lightning now and hears the thunder just as a cloud of dust comes up from the road and the bull bar from the Ute comes first around the corner.
“Mum, come quick and bring the girls. Look what uncle and aunty have brought with them.” Mum rushes to the front door just as the cars pull up and the clouds come over. The rain bursts out of them like stuffing from a pillow.
They all step down into the rain, not caring that their clothes are soaked just hugging their family and everyone is laughing and crying at the same time.
“This is the best Christmas present ever,” says Dad.
“Dad, I told God he could have my best slingshot if he brought the rain,” the boy says. “I guess I better go give it to him.”
They all stand there for the longest time laughing. This is how a bush Christmas should be.
[Rowe 2002] 

The Lifetime Work
The people I see are walking through life with eyes closed.
They want to make everything different,
but they do not know where to begin.
How can they change the world and make it a better place,
without changing themselves?
The things in my life are changing all the time:
I am not the same person I was a year ago.
The loves and hates I had a year ago are different to the ones I have now.
There is no other way to go without making changes,
because there have to be changes with everything
for life to get better.
I want to grow into something beautiful
and I have to change for this to happen.
It is the same for everyone:
There is not one person who does not have to change
in order to get stronger, better and smarter
than they already are.
Can we all give each other some patience while each one of us grows?
It is going to take each of us a lifetime to get where we need to go.
© Peter Rowe 2003
Written with Ryan O’Connor, August 2003

[Rowe/O'Connor 2003]

Back to Speechless and Bolt.

There is also Nigel Hunt and his diary. It would be a good one for a young Adrian Mole or Anne Frank fan to read. It is now about 50 years old as it was published first in 1967.

Hunt was 20 years old when The world of Nigel Hunt was published.

Of course you can read modern-day writings in blogs. Over the past 25 years there has been a lot of lifestory work - some of which I've recommended to Camille de Fleurville who writes at Sketches and vignettes from la Dordogne and Lights and shades.

Nigel Hunt is mentioned in "The Individual and Social Education".

This is chapter 5 of "Humanistic Perspective" by Shunit Raiter from 2008.

We meet Hunt again in Alison C. Carey's chapter in Disability Histories - a good quote from pages 53-57

Finally for #31for21 - in the last academic year [2016-17] Kayla released her poetry collection with her class:

Life Is A Mountain
Life is a mountain
high in the sky
It makes me tired
to climb up the mountain
The mountain is big
with pretty things to see

In the sky birds fly
High above the waves they fly
the birds are seeing

A Happy Birthday
Lucas, Happy Birthday!
You're nine years old today
You are a nice brother
I don't want any other
You are sleepy today
But with you I love to play

The Dolphin
The dolphin is swimming in the sea
The dolphin likes singing and dancing in the sea
The dolphin is swimming in the sea
Just like me

This time last year Camille de Fleurville and the Elder Sister had strokes and epilepsy to contend with.

By the end of October 2016 the de Fleurvilles were "in need of a word of comfort".


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