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In this podcast Pete and Tristam talk with Eliza Hull about what it is like parenting with a disability, her struggles with Charcot-Marie-Tooth disease and what she discovered about parenting with a disability when she fell pregnant four years ago.

Eliza Hull is a mother with a physical disability. She has a neurological condition, ‘Charcot Marie Tooth’, which affects her nervous system.

She is also a singer and songwriter, and has written music for TV, theatre and film. More recently she produced the series ‘We’ve Got This’ for ABC Radio, National Life Matters and ABC Life about parenting with a disability.

Podcast Duration: 21 minutes

Podcast Release Date: March 25, 2020

Produced by: Black Me Out Productions

Additional reading

We’ve Got This

Parenting with a Disability is a new series produced by Eliza Hull. Eliza has a neurological condition ‘Charcot Marie Tooth’, and she’s the ABC’s 2018 Regional Storyteller Scholarship recipient.

When Eliza was pregnant with her daughter, she felt unrepresented in every one of the countless parenting books.

Discouraged, she was prompted to develop a project sharing the stories of parents with disabilities in a way that could accurately represent each family’s life.

The series explores the complexities that parenting with a disability brings, whilst also challenging the stigmas and stereotypes.

Listen to the series here

More links

View transcript

Growing Bold while parenting with a disability

Welcome to the Grow Bold with Disability podcast brought to you by Feros Care. A podcast dedicated to smashing stereotypes and talking about the things people disability care about most to help us live bolder, healthier, better connected lives. I’m journalist Pete Timbs and I’m Tristram Peters. I work for disability service directory, Clickability, and am a wheelchair user living with spinal muscular atrophy.

Today’s episode of Grow Bold With Disability is Growing Bold while parenting with a disability. And our guest is Eliza Hull a singer songwriter, mother of three-year-old Isabel and an advocate for people living with disability

In this episode, we’re going to discover who Eliza is. Her struggle with Charcot-Marie-Tooth disease and what she discovered about parenting with disability when she fell pregnant over four years ago. Eliza welcome to Grow Bold with Disability. Hi. Thank you very much for having me.

Eliza, you were diagnosed with Charcot Marie Tooth at the age of five. Can you explain what that is? Yeah, it’s a neurological condition and it basically means that the messages to my brain aren’t connecting. So, it’s my peripheral nervous system. It affects me in the way that I walk, I fall over regularly. I have muscle weakness. And sensory differences as well. It’s similar to MS so it’s kind of within that family of affecting the neuro paths.

So, you were diagnosed at five. Did it come on at five or you just weren’t diagnosed. Are you born with this is basically what I’m asking? Look, I think you are born with it. I think that’s how it works. And then you show symptoms that at any age, so sometimes people don’t show symptoms until they’re 60.

For me I started showing symptoms when I was five. And it was just that I started falling over a lot at school and I was then taken to the Royal Children’s and had varied diagnoses. So, started off by saying that I had all different disabilities and disorders and finally, I think it would have been about the age of eight, that they diagnosed me with Charcot Marie Tooth. So, you mentioned school there briefly. What was it like growing up with the condition? I can’t really remember those early days of falling over, but I think it would have been exceptionally hard. I do remember certain kinds of things, like falling over and it being like a rocky road at my school. It’s funny that that those are the kind of memories that I have, lots of blood down my knees and you know, a lot of pain and uncertainty of what was going on. I guess when you are a child, you know, I think within the medical world a lot of medical professionals talk about you and not to you. I think there’s a lot of that going on. But, you know, the primary school, to be honest, was also really filled with amazing memories. And I think that that has a lot to do with my singing. And I had a lot of great friends. But then in high school there was a little bit of bullying at a high school, and I guess that real need of wanting to fit in.Of wanting to fix my disability and make it go away.

So I really struggled with that in high school and look to be honest, even in my early adult hood life, it’s only really been in the last five or so years that I’ve kind of realized that it’s actually society that really fears disability and it’s the kind of the way that we live in this world with all the batteries that we face that makes disability a hard thing. It’s not my disability it’s all the world around me and social fear. The way that the world deals with disability is where I found it really hard.

How did you find the teachers at school, were they accepting of this? Or were they trying to brush it under the carpet and ignore it? Look, I think mostly they were really great. I have memories of my teachers, at one camp where I was a wheelchair user at the time. I just had to some operations, and I do remember that they all went on this big walk down to the beach and there was a huge rocky path, so it was not accessible for a wheelchair user. And I do remember him saying, “Well, you know, you’re not gonna stay back. You’re coming with us.” And he carried the wheelchair and carried me. Yeah, like those kinds of memories where you just know teachers go beyond their role and make sure that they are including you.

And then I think that was mostly the case. There were sometimes where some teachers made me feel inadequate for not being able to take part in sport but on the most part, they were great. And you felt really at home, obviously singing and within music. Does Charcot Marie Tooth affect your music career? Look, to be honest, it was a strange coincidence that I started singing quite young and started developing symptoms of Charcot Marie Tooth at the same time. So, it was Serendipity, I think. It’s enabled me to be able to express myself and make a great community of friends and forge my career. It’s just been something that has kind of been everything for me, something that I can do to express my emotions, my feelings. It’s therapeutic and it’s also my career.

It’s been challenging at times, especially touring internationally and nationally because venues are still not accessible. There have been times where my band have had to help me up on stage. But you know, I think times are changing and venues are taking more responsibility and creating more accessible venues. Festivals are more inclined to ask what your access needs are. I feel like it’s becoming a more inclusive industry which is great.

With the venues that aren’t accessible, and you rock up and your band has to assist you, what does the venue do? Do they jump in and help as well? How do they do that? In all fairness, I probably haven’t really been within the disability community and disability space up until about five years ago, whereas now they really started talking about it. I think the venues to be fair, probably didn’t even really know. And it was something that I kind of hid from them.They would have known when they saw me walk but it was not something that I would have talked to them about or made something off.

Just recently, I did a show and I arrived at the venue, and it was a stage that had been created for the space. And she was like, “I cannot believe it, you’re in the disability community now and you’re talking about it and you’re advocating for this and I’ve just done the thing I thought I wouldn’t do. I’ve created the stage you can’t get up on”. So, I think for people it’s a learning experience, but it makes it harder. It shouldn’t be that way. Any performer should feel like they can get up on the stage. Hopefully venues are learning from these experiences.

Well people are becoming more and more aware of the sort of factors in life. And as you said, you have only really start acknowledging it in the last five years or so. Why do you think that changes have come about in the last five, maybe even 10 years, that people are a lot more aware of people, their disabilities and their needs? Look, I think like all diversity and across all kinds of minority groups there is change happening. People are realizing that diversity makes an incredible world and a beautiful world. And I think people are taking that on. Also, I think because of social media and the online world, we’re enabling people disability to be able to get and speak within the space. And so, you know, we’re not being silenced. I guess people are speaking out. It’s time for change and people of feeling that. I don’t know. I also think it’s something bigger than that. I can’t even describe because I really felt that not only was I ready to talk about it, but I felt like everyone was, the world was ready. And I felt really held within the space. It was a bit of feeling like I was ready. But everybody else was ready too.

Absolutely. And so, you are also a loving mother to young Isabel. Was your condition a factor when trying to fall pregnant? Yeah. Look, that’s really one of the main reasons that I decided it was really time to talk about my disability. And that’s because I felt strongly that I wasn’t represented as a parent with disability anywhere I looked. Any book that you get given, or any film or TV show where are parents with disabilities, you just don’t see them? I felt really underrepresented. Also, whenever I dealt with medical professionals, they always quick question my ability, whether I could parent and whether I should parent because I have a 50% chance of passing my disability on.

And not only that, I guess there were modifications that I would have to make to make sure that my child was gonna be safe, like getting her out of the car. You know, I can’t run after her, holding her, lifting her, all those things that were, you know, modifications that I had to make. But their questioning my ability to make those decisions really started to affect me. It started to really hurt. And then the more that I looked around and realized that there was so much discrimination and ableist behaviour around parents with disabilities. So much so that children in Australia are still being taken away from their parents because they have a disability. I realized that they were conversations to be had.

And so that led me to make this series that I made on parenting with the disability. Yes, so tell us a little bit about. It’s an audio series with the ABC. They gave you a grant. I’ve watched a couple episodes. It’s amazing. And the challenges that these people have overcome are incredible.I have as well as a singing background. I have a media background. I’ve always loved journalism. And I saw that they were looking for a content maker with disability that lived regionally, and I live in Castlemaine. I ticked all the boxes. At that time, I was forging the idea of the parenting series and was going straight into a book. But when I saw that opportunity ended up applying and was the recipient of the regional storytelling scholarship. I was able to make an eight-part audio series that I made with radio nationals and then also five articles that I wrote for ABC Life.

It was an incredible experience because it enabled me to travel all around Australia to interview all different parents with disabilities. And the common thread I found is that every parent was unlike any other family that I’d ever been into. You know, we’re all the same and whilst they all had struggles, it was all due to society.

So, what they dealt with in society, the stairs, the discrimination, the questioning. They all had ability to parent. But it was all the questions that they had dealt with. So much so that I interviewed two parents that were blind, and they were questioned as to whether they should even have children or whether they should keep their children.

Emma Bennison, who’s the mother that was blind, was worried that her children were going to be taken away from them. But they’re incredible parents and their two children are now grown up, in their teenage years. They are an incredible loving family that have had to make some modifications but are parenting wonderfully.

Tell us about some of those modifications because those modifications are quite incredible, some of them. Especially the ones where, how they found out where the kids were, what did they do for the kids and their shoes? They put bells on the kid’s shoes so when they go out to the backyard, which was an enclosed space, as their hearing abilities are heightened, they would hear the children wherever they moved. And it was quite funny when I was interviewing them, the daughter was trying to steal a box of cookies from the cupboard and trying to creep past her parents. You know, she knew that they couldn’t see her, but they instantly as soon as they heard the box said, “You know, I can hear what you’re doing, you’re getting the cookies out of the cupboard.”

I think that that proves but we all make modifications in life and they had to make some, and they still do. But they’re fantastic parents. I think that’s a skill of all the parents to think outside the box and be inventive and and all that. I mean, what would you tell other people that were considering becoming a parent with a disability? That it’s possible? That you must know your own limitations and it’s up to you as an individual as to whether you would like to be a parent. It’s not up to other people. It’s not up to medical professionals to tell you whether you should or shouldn’t have a parent. It’s up to whether you would like to have a child and you can make modifications.

Like every parent that I interviewed there are so many little life hacks that they all made and there is so much assistive technology out there now as well that enables parenting. If you are a wheelchair user there are slings that you can use, there are ways to bath your baby.

It is thinking about it but it’s also taking that step to make you feel empowered to be able to make that choice.

Well, you have a three-year-old at home. Is there plans for another one. Yes, there is. I’m pregnant right now. Congratulations. Yeah.I’m due in April. This is our second child and it will be our last because we always just wanted to have two. So yeah, it’s exciting. Pregnancy in itself is tricky when you have a disability but it’s possible. It’s possible. It’s tricky, but it’s possible.

What are some things that you have had to adapt around being a parent with a young baby? So, for instance, I’m very much in the thick of it right now, preparing for a baby. And I’ve just ordered an Aqua Sling. That enables me to have a shower with my baby so that the baby could be on you. And if you did have a fall or if you did, you know, accidentally anything could happen, so if you did slip the baby is completely safe on you.I just ordered that. There’s also a way that you can bath your baby in a way that you don’t have to hold the baby because it’s in a little capsule in the bath so it can’t fall when it’s all strapped in. I ordered that as well. It’s also thinking of ways to do things safely. So, for instance, when I get my baby out of the car, I make sure that I’m in like a seated position and can do an easy transfer into the pram. I do everything completely safe. It’s about making sure that that’s always at the front of my mind, making sure that I’m safe and the baby’s safe.

It goes to the fact that often, it’s society that disables people with disabilities. I know that as a power chair user it’s often the stairs that stopped me from getting access into a building. Not the fact that I can’t walk. And your series does a wonderful job of normalizing disability. What is the next step? What’s the big message that we need? Is it more coverage in mainstream? What’s the next part of that chapter? For me personally? Correct. Well, I totally agree. I base all my thinking on the social model of disability, which is that the world disables us. It’s not our disability. So, you know, you could go to a different country and you walk off that plane or if you are a wheelchair user you get off that plane and you can be more disabled in that country than if you get off on another plane somewhere else. I think that really proves that the world around us is disabling. It’s the stairs. It’s all the barriers, like people that are blind and not being able to have visual ques for the news and all these things that should be available that are still not available. Instead, people with disability face constant barriers every day.

Just recently, I created a TV show that’s just aired on ABC Me. And it’s a kid’s TV show on disability. It’s about the social model of disability, and it’s about a boy that has dwarfism and he wakes up and for some reason, the world around him is just not working. And yet we see him, and we’re like, “that is working”. The stairs are working because they look like quite ordinary and quite normal. But he keeps saying that things aren’t working. He then wakes up the next day on, and the whole world around him has changed and the stairs move and the floor raises up so he can reach things and his bag moves in, the gate opens and the whole world becomes accessible. Brilliant.That then follows through with the whole attitude that he then faces at school, from the school kids. I just wanted to show kids that it’s the world around us that is disabling that boy. And if those things change then it’ll feed into social attitudes.

Fantastic. Now Eliza as you know, this broadcast is called Grow Bold with Disability. We always like to finish up with this one question, and that is tell us what living a bold life is to you. Okay. I like the word bold, by the way, is much better than brave. Bold. To be honest, I think it just goes back to being yourself, being authentic, being true to yourself, being real. I think it’d be a real shame to end this life and not feel like you were yourself and not feel like you could speak your mind and be true. So being bold is being you.

Fantastic. Eliza, thank you so much for joining us today on Grow Bold with Disability. It is brought to you by Feros Care. Best of luck with baby number two in April. Thank you very much. Thanks for having me.

And listeners could find out more about Elisa and her incredible journey in the links provided in today’s episode. You can check out her ABC audio series and ABC me. Thanks again for joining us. Thanks so much, Thank you very much later.

Thank you for listening. And if you have enjoyed today’s episode that make sure you subscribe to the podcast, Grow Bold with Disability and if you like what you heard then please take a few moments to pop over to iTunes and give this podcast a quick rating so we can continue these conversations and encourage people to grow bold. This podcast is brought to you by Feros Care, a people care organization committed to helping people live bolder lives. We call it growing boldly and for over 25 years, Feros has been making it real for both older Australians and those living with disability. To find out more head over to Feroscare.com.au

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The content and views discussed in this podcast series are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees. 

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Mother, musician, writer and disability advocate

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