Eliza Hull - Weve Got This: Stories of Disabled Parenting

Praise for Weve Got This

Eliza is a legend and a great advocate for our community. This book will help a lot of people! DYLAN ALCOTT, Paralympian

Weve Got This is the book I needed many years ago when I was considering whether to have children. Now, as I embark on motherhood, these stories from these incredible parents will teach me so much. NAS CAMPANELLA, journalist

All parenting is a leap of faith: with a disability its a powerful affirmation of life as the stories in Weve Got This reveal. VIRGINIA TRIOLI, journalist and radio/TV presenter

Weve Got This challenges the narrow stereotype of what disability looks like. It shows that disabled people are parents too and bloody good ones at that! Thank you, Eliza, for disrupting the discourse. LISA COX, media professional and disability advocate

Eye-opening and heartwarming, Weve Got This will make you laugh, cry and rethink disability entirely. A must-read. HOLLY RANSOM, public speaker and author

Full of deep, beautiful, important stories. Ive learnt so much from this book. CLARE BOWDITCH, musician, actress and radio presenter

Weve Got This shows whats possible that disabled people make brilliant parents. Eliza Hull is a skilful curator. This book should be mandatory reading for healthcare professionals, educators and everyone wanting to be a better disability ally. CARLY FINDLAY OAM, writer, speaker and appearance activist

Published by Black Inc.,

an imprint of Schwartz Publishing Pty Ltd

2224 Northumberland Street

Collingwood VIC 3066, Australia

www.blackincbooks.com

Introduction and interviews Eliza Hull 2021

Eliza Hull asserts her moral rights in the collection.

Individual stories retained by the authors, who assert their rights to be known as the author of their work.

ALL RIGHTS RESERVED.

No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form by any means electronic, mechanical, photocopying, recording or otherwise without the prior consent of the publishers.

9781760642938 (paperback)

9781743822241 (ebook)

Cover design by Akiko Chan

Text design and typesetting by Typography Studio

Photographs courtesy of the contributors and Brett Scapin (p. 52),

Fi Mims (p. 150), Leah Jing McIntosh (p. 204), James Spencer (p. 213),

Shira Rotem (p. 253) and Micah Jones (p. 278).

Foreword

by Jamila Rizvi

I VE SPENT A little over four years learning to navigate the world in a new body. In that time, Ive survived two brain surgeries, thirty-six days of radiation treatment, four lifethreatening hospitalisations, and theyre just the headlines. Life, however, happens in between the big, bold writing. Its smaller. Quieter. But no less complex.

This new body is not like my old one. The expectations of friends and the pressures of work are in a constant state of conflict with this body that behaves differently. This body that does not conform.

The structures and services of society were not built for her. I need my fingers and toes to count how many times Ive been stuck in the CBD on a hot, sticky day and wondered why there arent beds on public transport. Sometimes sitting upright on a lurid-coloured tram seat is simply too much. Sometimes you must be horizontal.

My six-year-old son understands that Mums body is complicated. He knows where the emergency cortisol injection is kept and how to call Daddy or the ambulance for help. But the days when such knowledge is required are thankfully few. More often, it is his compassion and flexibility that are required. Qualities not generally abundant in a kid who hasnt learnt his multiplication tables yet. A kid who regularly forgets to dress himself in the mornings because hes been distracted by a Transformer, a rubber band or his own fingernails.

When Mum is feeling sick, my boy proves he is no longer a baby. He clambers onto the bed, with his enormously gangly limbs, and pats my legs. His eyes are full of emotion, checking to see if I am too hot or too cold or if I need a glass of water. He holds my hand and strokes my hair. Do you want company, Mum? Or privacy?

Company. Always company.

I grit my teeth through the pain which comes from deep inside my bones. I breathe deeply until the nausea abates. I silently recite lyrics from my favourite musicals to distract from the headaches. And I remind myself that this too shall pass. That this is a tiny price to pay for being alive to watch my kid grow up.

On the rare days, my frustrations spill over, my child is quick to forgive. While I try never to speak ill of my body in front of him, even the best efforts fail occasionally. In those moments of despair, I berate the loss of function, ability, beauty and agility I once possessed. But my son is as protective of the vessel which carries my soul as he is of the soul within. Dont talk about your body like that, Mummy. Its a beautiful body.

I am both cared for and care-giver. A combination for which I have so far failed to find words.

But, finally, here is a collection of stories just for me.

JAMILA RIZVI

Introduction

by Eliza Hull

B EING A DISABLED parent is a rebellious act. Disabled people should have the same right to parent as anyone else, but often when we decide to start a family we are met with judgement and discrimination. We are questioned rather than supported. We have to push up against the medical system, which is particularly problematic for disabled people. And we have to confront how ableist societys model of parenting is, even in the twenty-first century. Yet, despite all this, we still choose to parent. And we are damn good at it too!

I became a parent six years ago. Id always had an innate drive to have a family. As a child, I wrote in my diary that one day I would have children. My parents always hoped Id have children. When I told them about my desire to be a mother, not once did they discourage the idea; they were excited and supportive of me starting my own family one day.

I have a physical disability, a neurological condition called Charcot-Marie-Tooth. It affects the way I walk. I fall over regularly and have muscle and sensation loss throughout my body. Lack of circulation creates freezing cold legs on hot summer days, and I am consistently fatigued and in pain.

When I first seriously considered having children, I spoke to my neurologist. I had the hugest smile on my face: at the time I was in love and elated just thinking about the possibility of children. Ill never forget his stern and unforgiving look in response; he couldnt hide his disapproval. Silently he wrote notes on his computer as I waited. After what felt like hours, he lifted his head, adjusted his glasses and began to flood me with questions. Have you considered your options? As someone with Charcot-Marie-Tooth, you have a 50 per cent chance of passing on your condition. Have you looked into genetic counselling? We could do a panel blood test again? Do you think you will be able to manage?

I felt like I was crumbling. Shame overcame me. Were taught to trust medical professionals, so his words really stung. Im used to discrimination: Ive had people stop in the street and pray for me. Ive been stared at and ridiculed. But this was far more insidious: this was someone in a position of authority, someone who I was supposed to trust, suggesting it would be best if I didnt have a child in case they were