Eliza Hull on parenting with a disability

published on July 23, 2020

And that girl's drumming That girl's in a wheelchair Yeah, that girl's in a wheelchair ELIZA: I have a disability known as Charcot-Marie-Tooth, which is a neurological condition It's a physical disability And it's affected by my nervous system not sending

The messages to my brain When you have, you know the complexity of being a parent with a disability, it can make it harder But I truly believe that one of the hardest things is not home life and not being a parent with a disability in the home,

It's actually what happens outside the home I had an idea that I wanted to tell the stories of parents with disabilities and this year I was the recipient of a regional scholarship with the ABC, which has enabled me to travel around Australia

To tell these stories In all of the stacks of parenting books, there were no mums like me That's what I've set out to change in this series I went to Hobart to interview Emma and Vaughan Bennison, who are parents that are blind

They have two children that are sighted They spoke about when the two children were toddlers and how they added bells to their shoes so that they knew where they were EMMA: The concerns people used to level at us was, oh you know,

"How are you going to make sure that the baby's clean?" "How are you going to make sure that their nappy's changed appropriately, etcetera?" And you know, that's just very easy to do by feel So yeah that, it quickly became clear to me that that wasn't an issue

VAUGHAN: So one of the things that I was particularly focused on was how we were going to find ways and places of changing babies when, when we're out and about in public, because I certainly didn't want people to be staring at us, because I certainly didn't want people to be staring at us, and judging us, and what have you, and judging us, and what have you,

But I also wanted to make sure that that my baby was, was appropriately taken care of EMMA: There are times that teachers have assumed that they need to read to our kids because we won't be able to, and it's not until I've pulled out the braille book with the pictures

Or whatever it is that they've gone, "Oh, OK, so that's not an issue" So it's just lack of exposure really, and ignorance born of fear that I think we are up against ELIZA: I met Carol Taylor, who lives in Queensland I felt really honoured when I went into her house

Because she's such an open and warm, and friendly person – Thank you so much for having me – You're very welcome It's a pleasure CAROL: Robert and I were newlyweds, and we had just returned from a weekend away at the Blue Mountains And on the way home, early in the morning, we hit black ice, and the car rolled

And on the second roll, the roof caved in, and hit me on the back of the neck, and instantly severed my spinal cord And it left me a quadriplegic paralysed from the chest down, and with paralysed hands Andin that split second my life was forever changed

She desperately wanted to have children, and after 15 IVF attempts, her and her husband ended up deciding to give up on the idea of having children And then naturally they fell pregnant with their son CAROL: I had another nurse on another occasion when I was having some blood taken, more or less

Suggest to me that it was a little bit selfish of me to have, you know, to pursue this, and "Isn't it hard on him, and isn't it hard on your husband?" Almost to make me feel a little bit guilty And in those early years, I wasn't strong enough to stand up and say what I'd say now

Even though most people wouldn't think that she'd be able to play with me, being in a wheelchair, she used her tray as like an area for me to play with my toys when I was really little I've never really known any other life without a disabled mum, but I find it completely normal,

And I know how to deal with things when my mum has something wrong So I just find it completely normal For a very long time, I was confused as to what to call this series I had lots of ideas, but funnily enough I asked Vaughan

You know, what he would say to people that may potentially question his ability to parent And he straight off the bat said, "That we've got this," and it really hit home It resonated with me It felt like it was the whole journey of what the whole series was about

That in fact, we have totally got this Can you hear me, John? <i>Hey, Eliza Well, if you're ready,</i> <i>we could start recording</i> OK great

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