'We've Got This': The first major anthology by parents with disabilities

‘We’ve Got This’: The first major anthology by parents with disabilities

This is an extract from We’ve Got This, edited by Eliza Hull, published by Black Inc. and is available now.

Being 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 society’s 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. I’d 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 I’d 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. I’ll never forget his stern and unforgiving look in response; he couldn’t 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. We’re taught to trust medical professionals, so his words really stung. I’m used to discrimination: I’ve had people stop in the street and pray for me. I’ve 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 didn’t have a child in case they were like me. It affected me deeply. I can still feel the pain in my chest from that day; it flares again in moments of self-doubt. 

In June 2014, we found out I was pregnant. A rush of adrenaline filled my body and I had a rollercoaster of emotions: fear, uncertainty and excitement. The neurologist’s questions haunted me: how was I going to do this? I grappled with other questions too. Would the pregnancy be too hard on my body? Would people judge me? Could I manage? What if I fell over while holding my baby? At times my head was a whirlwind of anxiety. 

I spent hours searching bookshops for a volume about parenting with disability. I wanted to feel represented, read a story like mine, know it was possible. I needed reassurance, to find a friend on the page saying, ‘Yes, you can do this.’ But there was nothing out there. In all the stacks of parenting books, there were no mums like me. I felt incredibly alone. 

Where were the disabled parents? Why couldn’t I think of any movie or TV show that included a parent with a disability? More than 15 per cent of Australian households have a parent with disability, yet we are nowhere. 

I knew representation mattered – so it became my mission to share the stories of disabled parents, to help other disabled people know they’re not alone, and to show it’s possible. I searched for other disabled people worldwide who were parents, and little by little I felt less isolated. It became an obsession, and I created a pool of people who I could reach out to. It began to feel like a community of sorts, a way for us all to feel connected. The common thread was that we all felt underrepresented and alone in our decision to parent. 

All new parents know the feeling of bringing your baby home and wondering: how the hell do I do this? Parents with disability have an added layer of pressure. Often we feel judged and misunderstood, like the world is watching and waiting for us to make a mistake. Yet because we are already masters at problem solving in daily life, we are perfectly placed to master the art of parenting. 

The parents who share their stories in We’ve Got This are ingenious, creative and adaptive; they constantly have to navigate physical, attitudinal and social barriers within society. They have faced discrimination and they have had their choice and ability to parent questioned. This is especially the case for parents with intellectual disability. What these parents show us, though, is that parenting isn’t black and white. There shouldn’t be a template we all follow to the letter. Parenting as disabled people demands we let go of the ‘standard’ or ‘right’ way to do something; instead, it’s about being creative and flexible – and children are so beautifully open to being adaptive. These stories show us all how rigid the conventional ‘template’ of parenting is, and these parents display an inner strength that any parent would envy and could learn from. 

Parenting with a disability doesn’t look like following a textbook; it looks like love, connection, pride, innovation and adaptability. We’re rebellious, not in a brave, heroic way – more in a bad-arse way! We face so many societal barriers as soon as we decide to parent. I hope by the time you have finished this book, you’ll agree with me that it shouldn’t be this way. I also hope that we will begin to experience a more inclusive world where being a disabled parent is accepted and normalised – where it is no longer a rebellious act, but just another form of parenting. 

I hope that all readers – disabled or not, parents or not – will find something empowering about reading these stories of resistance and rebellion, courage and creativity. And for any disabled person about to dive into the unknown, exciting, terrifying and heart-exploding world of parenting, I want you to know there’s a community of people out there to support you – you’re not alone. I hope this book will help you realise that – like all the parents who share their stories here – you’ve got this!

ELIZA HULL is a contemporary musician, disability advocate and writer based in regional Victoria. She has been published in Growing Up Disabled in Australia and her podcast series on parenting with a disability, We’ve Got This, was one of Radio National’s and ABC Life’s most successful series of all time. She was awarded the Arts Access Australia National Leadership Award in 2021.

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