parent opinion

Eliza Hull has a disability. When she wanted to have a baby, her doctor advised her not to.

When musician, writer and disability activist Eliza Hull excitedly told her doctor she was considering motherhood, she was shocked when he tried to advise her against it. 

"My neurologist was someone I had trusted for so long, I classed him as a friend," Eliza told hosts Leigh Campbell and Tegan Natoli on a recent episode of Mamamia's This Glorious Mess podcast.

"He recommended that I don't become a parent because, as someone with a disability, he didn't think I could manage, and he questioned how I could even carry my child. 

"Instead of helping me to become a mum by saying, 'This is how you could do it or adapt', he made me feel a lot of shame. I questioned whether I could cope - and I almost believed him."

Watch: The Auslan signs to use with your family. Post continues below. 


Video via Mamamia.

Thankfully, Eliza's supportive partner helped her to see that he was wrong, and that she needed to push back on his negative opinion.

"He said, 'Yes, you have a disability, but look at what you have already achieved in life!' He helped me to see that I'm adaptable, I can problem solve, and I could do it."

As a happy and well-supported mum of two kids aged seven and two, Eliza says that it is not her neurological condition, Charcot-Marie-Tooth disease, that has been the hardest part of becoming a mum. Rather, it is dealing with the attitudes of people like her neurologist.

"The hardest part of becoming a parent for me was not what happens at home, but out in society. 

"When I had my first baby, I really noticed that people stared at me a lot more and people looked more concerned. One aspect of my disability is that I have trouble walking and I can fall over. 

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"People would question how I manage and I felt a lot of that judgement and discrimination from society. I wanted to help change these attitudes and the stigma that still exists around disability and especially for parents with a disability."

Listen: Eliza Hull on parenting with a disability on This Glorious Mess. Post continues below. 


Eliza says that the idea for her new book, We've Got This: Stories by Disabled Parents, came to her while pregnant with her first child, when she discovered how little positive representation there was of parents with disabilities. 

"I would search online for stories I could relate to, and I realised that there was nothing out there.

"It's quite alarming when you think statistically that over 15 per cent of Australian households have at least one parent with a disability. I just wanted to feel less alone about parenting with disability. And I also wanted to know what it was going to be like and learn some practical tips. 

"When I found some information, often on a blog, it was from the angle that it was a burden for a child to have a parent with a disability. I decided I wanted to create something that could really help to shift this narrative and educate people."

We've Got This is a collection of stories that Eliza sourced from 25 parents who identify as deaf, disabled, or chronically ill. She began the research process while sleep deprived with her newborn.

"It was a really hard task, but us parents are pretty incredible with what we can do on such little sleep!

"I drew on the contacts that I had within the disability community - a community that I'm really proud to be part of. I spoke to a real cross section of parents with unique perspectives in different locations around Australia; parents that were part of different diverse groups like First Nation parents, parents who are culturally and linguistically diverse, parents that identified as queer and a varied range of disability as well. Parents that are deaf, blind, autistic, have a chronic illness, an invisible disability, or parents with dwarfism."

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Eliza hopes that her book not only helps to break down the stigma and discrimination disabled parents face, but also shows the many positive effects that come from being raised by a parent with a disability.

"You wouldn't believe how horrible the discrimination still is from the wider community and even within the medical system. People say such awful and uneducated things and don't believe that mums and dads with a disability can make great parents.

"Elly-May Barnes, daughter of Jimmy Barnes, is one writer in the book, and she describes how her son Dylan is just the most kind, empathetic and giving child. 

"She writes about how Dylan's school principal rang her to say how he was absolutely thriving at school and I guess that was a really common thread from the parents: that having a disability enables future generations of kids to be really open-minded and kind to others." 

Eliza Hull. Image: Supplied. 

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After a recent interaction with a fellow parent at school, Eliza thinks that being honest with kids about disability is always the best approach. 

"When I was in the kindergarten line with my daughter, a child came up with their parent and asked about why I walked differently and what was wrong with me. That parent and I had just had a conversation about how I proudly identify as having a disability, and I even told her about my book.  

"But instead of sharing that with her child, she said that I'd been in a bad accident, which was not true. I don't blame the parent and I get it. We fear the word 'disability' still, and we see it as a deficit."

Open, honest conversations with the next generation about disability backed up by an increase in education and representation are, Eliza believes, the best way to ensure future parents with disabilities don't suffer shame.  

"The more books, TV shows or movies for kids we have that represent a disability and show that being disabled is not a bad thing, the better. 

"People with a disability make up nearly 20 per cent of our population [in Australia] and having a disability can bring a lot to people's lives. And that difference makes this world beautiful. Tell your kids it's okay to have curious questions. 

"I think that it is only problematic when you tell your child to look away. It's better to step in, reduce the stigma, and start an honest conversation."

We've Got This: Stories of Disabled Parenting by Eliza Hull published by Black Inc. is out now online at all good bookshops. 

Feature Image: Supplied. 

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