A Weekend with Oscar

by Robyn Bavati

  Laughter catches and spreads like wildfire. Dan is in his element. He continues making joke after joke and the audience are eating it up. There is humour in his ridiculous accents, his voice modulation, the gleam in his eye.

  All too soon, his five minutes is over. “I’m Dan Nguyen, and you’ve been a wonderful audience.” He waves as he walks off stage to a roar of applause.

  After Dan, there are spoken word artists, more comedians, another rapper. They build bridges, smash stereotypes, break down walls.

  After the last performer has left the stage, the MC returns. “Thank you for supporting Platform 15 ¾. Give yourselves a big round of applause.”

  Along with the rest of the audience, Zara and I file out of the venue that’s still buzzing with energy and wait for Dan. He appears, beaming, a few minutes later.

  “You were incredible, mate.” I give him a slap on the back.

  Zara high-fives him. “Brilliant,” she says.

  “Thanks. I’m starving,” Dan replies.

  We go to Yogogi in Swanston Street for a quick bite to eat, then head to the student exhibition at a gallery in the city, where some of Zara’s work is on display.

  We walk slowly from room to room and, for several minutes, I am speechless. The exhibition includes photography, drawing, painting, sculpture, mixed media, film, ceramics and even printmaking. To my untrained eye, everything looks so professional. Every piece is different, each artist unique.

  Dan is as bowled over as I am. For once he is silent, too humbled by what he sees to make jokes.

  It’s in the fifth room we enter – Zara’s locked door series – spaced at intervals, taking up an entire wall. It’s one thing seeing it in her shed, another seeing it here on display.

  Zara’s staring, open-mouthed. For a moment, she’s tongue-tied. She gives her head a little shake.

  “What’s wrong?” I ask.

  “Nothing.” She smiles. “I’m just . . . overwhelmed. The whole exhibition is so brilliant, I can’t believe my work was chosen.”

  “Your work is fantastic. You deserve it.”

  The three of us continue exploring. Our initial silence gives way to hushed conversation about what we see.

  There are people who talk a lot and say nothing, but the artwork here speaks volumes with no words at all.

  “How was it?” Mum asks when I get home.

  “What? Dan’s show or the exhibition?”

  “Both,” she says.

  “They were great.” I carry slices of apple cake to the table while Mum makes tea.

  “It must be nice for Dan and Zara to have such talent,” she says.

  “It’s more than talent. They’re passionate about what they do. And they know what they want.” I take the tea and blow it gently. “I was never sure what I wanted. And after Dad died, I thought my role in life would be to get a well-paying job to help pay the bills.”

  “No,” Mum says firmly. “You do whatever gives you meaning. You know that quote you always loved?”

  “Be fearless in the pursuit of what sets your soul on fire?”

  “That’s the one. I believe it’s the key to – I don’t like the word ‘happiness’ – let’s say, ‘fulfilment’. But you’re still young, Jamie. You don’t need to know what you want to do.”

  “No, but in the last few weeks, I think I’ve figured it out.”

  Mum’s eyes widen with interest.

  “I want to study psychology. I want to understand the Ethan Chandlers of this world.”

  “Is that guy still bothering you?” Mum asks.

  “No, but I want to know what makes him tick. I want to help guys like him gain self-awareness and acknowledge their fears because maybe then they’ll be more tolerant of people like Oscar.”

  “You want to study psychology because of Oscar?”

  “Not just because of Oscar,” I say. “A lot of what I saw and heard today was about understanding others. The kids who performed today and the kids whose art was on show – I think they all have one thing in common: they want to make the world a better place. I want that too.”

  “Wow!” says Mum. “When did you grow up so much? How did I miss it? I must have been in a coma or something.”

  “Don’t even joke about it,” I say. “And before you get too excited, I’m talking long-term goals. I’ve had enough adult responsibilities to last me a while.”

  “Fair enough,” says Mum.

  “And by the way, I won’t be offering to look after Oscar for the weekend anytime soon.”

  I hold her gaze. “Mum,” I say, “you know I’ll always be there for Oscar.”

  “I do know that. The bond between you two has always been strong.”

  It’s even stronger now, after all that we’ve been through.

  Oscar will always be part of my life.

  One of the best parts.

  Attitudes to people with disabilities are evolving, and we’re beginning to realise that disability cannot and should not define a person. Accordingly, the language around disability is constantly changing. To ensure that the terminology in this book is current and inoffensive, the manuscript was read and critiqued by two parents of children with Down syndrome, and tweaked accordingly. Nevertheless, I apologise if further linguistic changes have occurred between the time of publication and the time of reading.

  As part of my research, I interviewed young people with Down syndrome and their families, as well as parents and siblings of children with severe ASD and/or other disabilities. I learned that people with disabilities are often underestimated, and statements such as “People with Down syndrome are happy, carefree and affectionate” describe a stereotype that is neither accurate nor useful. People with disabilities are just as unique as everyone else.

  While I have taken care to portray Oscar as an individual (despite having given him an affectionate nature often associated with the stereotype), I would hate the reader to think that everyone with Down syndrome is “like” Oscar. Similarly, Hayley is just one individual with autism spectrum disorder, and should not be considered “typical” of a person with ASD.

  For so generously sharing their thoughts, feelings, insights and experience, all of which contributed to and informed the story, heartfelt thanks to David Chester, Sam Chester, Sandra Chester, Zac Chester, Michelle Feiglin, Moshe Feiglin, Virginia Frenkel, Avital Kirshenbaum, Hodaya Kirschenbaum, Leah Kirshenbaum, Hadassa Naparstek, Mimi Naparstek, Racheli Naparstek, Danny Shafar, Michael Shafar, Robert Shafar, Susan Shafar and especially Jacqueline Faye Shafar – if I hadn’t met Jacqui, I wouldn’t have written this book at all.

  Thanks to my friends and family for ongoing support, to Talia Boltin for answering medical questions, and to early readers Georgia Lawson and Yvonne Fein. Thanks to freelance editor Catherine McCredie, and to all the editors and proof-readers who worked on the manuscript.

  A special thanks to Debbie Golvan for multiple readings and invaluable feedback.

  To Linsay Knight and all the staff at Walker Books Australia, thank you for your care and professionalism.

  For those wishing to know more about Down syndrome, autism spectrum disorder and intellectual disability, visit:

  downsyndrome.org.au

  autismspectrum.org.au

  achieveaustralia.org.au/ndis-overview-and-faqs/intellectual-disability/

  First published in 2021

  by Walker Books Australia Pty Ltd

  Locked Bag 22, Newtown

  NSW 2042 Australia

  www.walkerbooks.com.au

  The moral rights of the author have been asserted.

  Text © 2021 Robyn Bavati

  All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means – electronic, mechanical, photocopying, recording or otherwise – without the prior written permission of the publisher.

  Cover images: Geometric background © sobakapavlova/ Shutterstock; basketball character © krissch /Shutterstock;<
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  teenager standing © Chipmunk131/Shutterstock