Yarning About Disability By Caris Jalla
Acknowledgements Curtin University supervisors Dr Jan Piek, Dr Cori Williams, Dr Jillian Pearsall-Jones and Dr Marion Kickett; and Cultural Consultant George Hayden. Aboriginal Community Reference Group members Jonathan Ford, Michelle Sultan, Rhonda Marriott and Rachel Visser. Appreciation to friends and mentors at Curtin University and Ability Centre. Many thanks to all the children and young people who participated in the yarning circles and courageously shared their stories. Acknowledgement to talented Aboriginal artist Noni Bonney for your illustrations throughout the pages. Warmest thanks to Kelabit artist Alena Murang for the exquisite depiction of my Tepu’ (grandfather) and sape music. Your ongoing creative inspiration to capture and share traditional knowledge for future generations is invaluable. Big appreciation to Kelabit artist Leon Jala for your painting capturing our motherland, Bario in your ‘Beyond the Hills’ painting. Deep gratitude and thanks to Rubin Jala for the photography and for just being Dad! Shout out to Chris Horgan from horgancreative for your assistance putting this resource together. Thank you for generous sharing your creative talent, it has been a pleasure working with you. Funded by the Endeavour Foundation, Endowment Challenge Fund Student Award.
Copyright © 2016 by Caris Jalla. All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the publisher, except in the case of brief quotations embodied in critical reviews and certain other noncommercial uses permitted by copyright law. For permission requests, write to the publisher by email email@example.com.
Dedicated to my family
Long ago the Noongar people lived off Whadjuk Boodja (Whadjuk Country). Whadjuk Boodja is the land we now call Perth and is home to the Noongar Nation.
For thousands of years
families swam, fished and
laughed along the Derbarl
Yerrigan (also known as the Swan River).
That â&#x20AC;&#x2122;s me!
My name is Caris and I live in Perth, the capital of Western Australia. Before I lived in Perth, my family lived in East Malaysia, where I was born.
Before I was born, my dad lived in a
very small village in some very large
mountains in a place called Bario, East Malaysia. He was born in a tiny village called Long Lelleng.
My Tepuâ&#x20AC;&#x2122; (grandfather) A long time ago, our people, the Kelabit tribe, lived off the Bario land - hunting and fishing. And a very long time ago, we had long ears for fashion! And a very, very long time ago we used to headhunt!
Now I live and work in Western Australia from Whadjuk (Perth) to Wongi (Kalgoorlie) Country. At Ability Centre, I work with people with different abilities.
One day I found out there is no Indigenous word for disability. Some Noongar people use the word winyarn, meaning ‘sick’, ‘sad’ or ‘poor fella’. In Kelabit, the word ma’it is used, meaning ‘sickness’.
I wondered to myself: â&#x20AC;&#x2DC;What do Aboriginal boys and girls with different abilities think about health, disability and living a solid life?â&#x20AC;&#x2122; I decided to ask them and this is what they told me.
I had a yarn with a girl called
Evangelena. Evangelena was born with one arm. She likes to go to school but told me that
sometimes she feels angry and sad at the same
time - like when people tease her.
Some kids think she’s dumb and can’t go to school
because she has one arm. But Evangelena is smart and she knows that her arm doesn’t affect her brain. Her
Nan taught her not to cramp up the feelings inside, but to tell someone about it. There are some things she only tells her dog - he’s a good listener.
Evangelena is very good at
seeing the good things in life
and often reminds herself that there are more good people in the world than bad
people. I agreed with
her and we hugged before I left.
I had a yarn with a young boy,
Eddie. Eddie was born with cerebral palsy and used a walker to walk.
When Eddie was young he used to get upset when sometimes he was left
out. But his mum and dad are good at talking to him.
Now Eddie knows how to click off and walk away from bullies. His dad cons him up - reminds him to stay strong inside.
His mum and dad also teach him culture. Eddie likes playing with his brothers and sisters. He loves riding his bike and playing basketball too. Sometimes he goes to Princess Margaret
Hospital and has appointments with his therapists.
I had a yarn with a young woman called Rachel. She was born with
hearing difficulties and when she
was little, she had surgery on her ears. Because only one ear works
well, she has to ask people to repeat
themselves when itâ&#x20AC;&#x2122;s noisy. Sometimes she has to ask three times - and still has trouble hearing them!
But Rachel knows how to laugh and focus on her strengths. She told me that keeping
healthy is not just about having a strong body but also having a strong mind and spirit. Rachel smiles and laughs a lot. We had a good yarn and laughed together.
I had a yarn with a young man called
Glen. Glen was born a small baby. When
he was inside his mumâ&#x20AC;&#x2122;s belly she drank
alcohol. Now he finds some things harder like speaking clearly because of how his mouth moves.
Glen exercises but not too hard because
of his weak heart. He works out and likes bodybuilding.
Through his early years,
Glen has learnt to better
understand his strengths and weaknesses.
One day, Glen wanted to find out more about Fetal Alcohol Spectrum Disorder. Now he knows himself
better and is able to accept his feelings. He really likes going back to his mother’s Country, it helps with spiritual healing. Glen is a remarkable man
who taught himself to never give up, just never
give in. He taught me that if you just keep going
you’ll get somewhere. That’s what he has learnt, and on that day - that is what I learnt.
After yarning with lots of people, I can see that everyone has different abilities. Evangelena told me
“Why don’t we call disability differability - because
everyone has different abilities.” Rachel
said that when she was younger, she wished that she
was normal. Now
that she’s older, she questioned “What’s normal?” and
realised that no one is normal!
Glen and I yarned about life. He said “Your goal is to complete things; it doesn’t matter
for you to understand the details. But make sure you do it just step-by-step. Just don’t rush it, just take your time, and you will adapt to do more things.”
The yarning reminded me that everyone is good at something. I am good at playing music, but not so good at singing! My dad is good at fishing and my mum is good at
listening. My sister is a fashion designer and talented at making clothes. My brother is better at singing and plays the guitar like a rockstar! His wife is an excellent cook and mother. They have two kids. My niece is really good at reading, and my
nephew is great at maths and Angry Birds!
At the end of the all the yarning I
wondered about the word disability and
thought about other words to use like...
can kiss) (abilities you
! y t i l i b a k r a Rem and...
What is... Cerebral Palsy (CP) is a physical disability that affects the way a person can move their muscles. Sometimes the muscles are affected a little or a lot and some people use a wheelchair to get around. Although people with CP will live with the condition their whole life, they can have an active and fulfilling life. Congenital amputation is birth without a limb or limbs, or without a part of a limb or limbs. This can happen when a baby is growing inside Mum and the blood flow to the unformed limbs is low. Some people get medical limbs made to help make life easier. Fetal Alcohol Spectrum Disorder (FASD) happens when a pregnant mother drinks alcohol and it affects the baby. The baby will usually be born smaller and may have some damage to their brain. This makes it harder for people with FASD to learn or remember but there are many ways to help people with their memory. Otitis Media (OM) is an infection of the middle ear. This can be painful and cause pus like fluid to come out of the ear. It is often called ‘glue ear’. If it is not treated, OM can lead to permanent hearing loss. Antibiotics can help kill the infection or very small tubes, called ‘grommets’ can help prevent more infections. Regular ear check ups keep ears healthy. The typeface used throughout this book is OpenDyslexic. OpenDyslexic is a new open source font created to increase readability for readers with dyslexia. The typeface includes regular, bold, italic, and bold-italic styles. It is being updated continually and improved based on input from dyslexic users. OpenDyslexic is free for Commercial and Personal use.
Bario Sunset (photo by Rubin Jala)
Henry Jala aka Napuun Beruh, my tepuâ&#x20AC;&#x2122; (grandfather) (photo by Joseph Kuek)
This resource was sponsored by the Endeavour Foundation ‘Endowment Challenge Fund’. Should you wish to make a donation please consider Kissabilities Inc. who provide disability awareness education to WA primary schools.
For an audio version of this story search ‘Yarning about Disability eBook’ on YouTube, or subscribe to the Care Collective channel.
Yarning About Disability This true tale is based on the qualitative research study undertaken by Caris Jalla at Curtin University, Perth. It shares the stories of four remarkable young people with different abilities, strengths and journeys.
For more information about this book, visit the Yarning About Disability facebook page: www.facebook.com/YarningAboutDisability/