Eliza Hull is a musical artist, writer, journalist and disability advocate. In 2022 she is the editor behind We've Got This: Stories By Disabled Parents. Her podcast series by the same name, We've Got This, was one of Radio National’s and ABC Life’s most successful series of all time. Eliza was also a contributor to Growing Up Disabled in Australia.
TRANSCRIPT
ASTRID: Welcome to The Garret, Eliza.
ELIZA: Thank you so much for are having me.
ASTRID: Now, Eliza, you are a musician, a writer, a journalist, and a disability advocate. You have an essay in 2021's Growing Up Disabled in Australia. I also confess I have an essay in that work as well, and I love that series. But we are not here to talk about Growing Up Disabled in Australia.
You have done something amazing. You previously released a podcast, We've Got This, about parenting and disability, and it was hugely successful. In 2022, you have built on that podcast and now you have edited the anthology, We've Got This: Stories by Disabled Parents. Congratulations, Eliza.
ELIZA: Thank you so much. And it's so exciting that it's finally out.
ASTRID: Let's start with the premise of both the book and the podcast. Why was this needed and why did you spearhead this effort?
ELIZA: It really came from personal experience and just feeling like there wasn't representation out there. Seven years ago, I was pregnant with my first child, and you get given all these parenting books and I just couldn't find any disabled parent in any of them. And when I thought about movies or TV shows, again, I just couldn't think of a parent that was accurately represented. Often, it was presented as that it was a burden for a parent to have a disability on the child. And so, I just really wanted to flip the narrative around parenting and make the book that, really, I was after when I was feeling pretty alone in my decision to parent.
ASTRID: This might be an unanswerable question, Eliza. There are so many aspects of parenting, particularly motherhood, that remain taboo, although the barriers are starting to be broken down there. Parenting with disability has even more taboos surrounding it, but also shame, and stigma, and a huge amount of misunderstanding and ableism. For our listeners, can you unpack some of that?
ELIZA: Yeah. For me, I mean, I have a physical disability which is called Charcot-Marie-Tooth, it affects the way I walk. I walk differently and fall over and have muscle loss. Every day looks different for me, depending on whether I've had enough sleep or what I've eaten. But it affects my whole body, even though, I guess, more visibly, it affects my legs.
When I was thinking about having children, I went to my neurologist – and I was so excited, I just met my husband to be – and I just couldn't believe, he just shocked me. He looked at me and said, ‘I don't think that you should have children. I don't think that's a good idea. How can you manage? What if you fall over?’ And so, I felt a lot of shame at that moment. And I believed him for a moment there, because I think, medical professionals, we are taught to trust them and to take their advice. And to be honest, luckily, I didn't because if I had have taken his advice, I wouldn't have the two wonderful children I have. But I think there is a lot of assumptions around what disabled people can and can't do. And I think parenting is, I think, one of the biggest areas where ableism is a huge problem. Examples within the book are two parents that are blind that went to hospital, and as soon as they were there, the social worker was called. Or two deaf parents that were at the hospital and they weren't given an interpreter and they were congratulated and the nurse was overjoyed because their child was hearing. Those kind of things… they really hurt and affect you.
And I think, really, one of the biggest issues that is spoken about in the book is especially related to intellectual disability. And that's because 60 per cent of parents with intellectual disability have their children taken into child protection. And I'm not saying that child protection is an important thing. There really is a need for it, but that is the case for all people, whether you're disabled or not, there are certain times where it's unsafe. But for parents with intellectual disability, it's an isolating experience. And there just isn't the supports and the education in place to assist these parents.
I remember when I brought my daughter home, I just looked at my partner and I was like, ‘How do we do this?’ It's such a big thing and an isolating experience. And so, it added complexities in the mix when you have an intellectual disability. And unfortunately, children are still being taken without those supports in place and without parents being given a proper chance.
ASTRID: Eliza, I'm really sorry that you had that experience when you first went to the hospital. I know it was more than seven years ago now, but I've met you in the professional context. Well, away from editing this book, we both served on the Victorian Disability Advisory Council, and the idea that somebody would say that to anyone, including you is so deeply offensive.
Now, we all know that there are institutions and structures in society that marginalise people, and that includes the media, it includes the health system, it includes schools, and education, and the workforce and so many places. This book is devoted to all of the systems that someone comes into contact with when they are a parent and choosing to become a parent. And even though we're having this conversation in the context of disability and being disabled or chronically ill, there are so many other forms of marginalization, and these are brought out in the books as well. There is race, as you just mentioned, there is intellectual disability, which is horrifically treated everywhere in Australia and there is age and gender, and so many other aspects to someone.
So as the editor of this anthology, We've Got This, how did you choose the contributors and seek to bring out all of the different experiences of marginalisation including those that intersect with gender, or race, or class or anything else?
ELIZA: Firstly, it was a really tough task trying to get a real intersection of varying disability. And then on top of that, the intersections. I prioritised getting writers that were also First Nations writers and also from culturally linguistically diverse and also parents that identify as queer. And I think these stories really highlight how hugely and problematic discrimination is out in the community.
For instance, Neangok Chair is South Sudanese, and she said, sometimes there was no help provided for her to even get on the tram. She was left on the side of the road with her child, and she felt like it was racism as well as ableism. She said she's just constantly getting questioned on the street as to her capabilities. And I think she said that it really is overlapping the ableism and racism.
And then for instance, Jax Jacki Brown, spoke about going to have IVF and people just constantly assuming and suggesting that they should be screening out for disability. And they stated that there was even one point where both of them were told that they actually had to screen, otherwise they wouldn't be able to complete the IVF process. They had to screen the disability and this went against Jax's preferences. Because they said, ‘Well, I've got loads of friends that have this disability that you're actually speaking about and yet you're saying that we don't even have the choice, we have to screen for this disability in order to have IVF’. So, I think that was a really hard thing for Jax. And they also spoke about parenting at the time when people were voting for or against gay marriage and how those two worlds intersected at that time. I think it felt very isolating for them. Their piece, it profoundly demonstrates just the transphobia, homophobia, and racism, and ableism still hugely problematic in Australia.
ASTRID: It really is. I found quite a few of the pieces in here confronting, and I think the bit that I come back to in my mind over and over is where you mentioned the fact that involuntary sterilisation still takes place in Australia. I feel like we should talk about that now, even though this is not a medical podcast, but Eliza, can you just put that in context for the listeners because these things so often don't get talked about. And the idea that somebody could be sterilised because they have a difference is excruciating.
ELIZA: I wanted to highlight that because this book is about parenting. There is a story in there of Heather Smith that speaks about having her child taken, so she wasn't given the chance to be a parent. And I also wanted to speak about the fact that sterilisation is still happening in Australia today to young girls and women with disability without their consent. They don't have any consent over their own bodies. And it's generally done in a very secretive way, where parents, caregivers are consenting to the sterilisation of young girls and women without their consent at all. And I've spoken to one particular person who's a friend and she was sterilised as a young person and had no control over what was happening to her body until it was too late. And she always wanted to have children. And it's just taken from her, that choice is just stolen and it's devastating. And Australia is still so far behind. There are many countries that are moving forward and making it illegal, rightfully so, whereas Australia still today, this is happening. And I don't think people realise that this is still happening today.
ASTRID: It's really confronting and that makes it even more important that stories are written and talked about. Eliza, as the editor of the anthology, you are putting together a work that is a representative in a way of the disability community and language is so important to the community.
I know that in your piece, at the beginning, you note that sometimes you refer to yourself as a disabled parent and sometimes you refer to yourself as a parent with disability. So you switch around how you describe yourself. How did you approach talking to the contributors, getting them on board and then working with their preferences to form cohesive narrative?
ELIZA: Look, I actually think I might have even reached out to you, Astrid. I've got a feeling. It was not something that I took lightly. I had a lot of sleepless nights around title, Stories by Disabled Parents. I spoke to a huge range of people within the disability community, contributors, advocates, and really the collective decision was to have the identity first language, so disabled parent instead of person first language. I was afraid and still slightly afraid, probably less so now that the book's out because I wanted to do the right thing and we are all different, although people within the disability community are varied and we all identify in different ways. And I also understand where person first language comes from. It comes from time when we were called other things like special handicapped or the disabled. And so, it was thoughtful, people first language, we are people.
I just don't really feel like we do have to remind everyone that we are people. And I see it as a statement of pride and identity to show we are disabled parents and we are proud, and we have got this, and we are parenting and thriving, and we're creative, and problem solvers, and we are doing it. And so for me, it was like stepping in to the pride and to the identity. But I also wanted to note in my chapter that there are many people within the book that identify in different ways. And some don't even identify with the word disability, some identify as having a chronic illness, some identify as Autistic or some identify as Deaf. But collectively, everyone was happy with the book stating Stories by Disabled Parents on the front, so that was lucky.
ASTRID: Lucky, but also a testament to use the editor. Not everybody gets it right, Eliza, at all. I am also a person with a disability. I'm a disabled person. I'm a person with a chronic illness. I veer between all three, depending on how well or not I am at any given point in time.
And because my illness is mostly invisible at this point, unless I happen to be really experiencing a relapse, I have not been able to settle. And so, I think that an openness to all the ways to describe that has made me feel seen in this work as well. Now, some of the contributors wrote their own pieces, others, you wrote for them after doing lots of interviews. Can you outline that process for us?
ELIZA: So, as I said, there was 25 people in the book and some decided to write their own pieces because they were familiar with writing and wanted to do that. And some others just weren't familiar with writing, but again, they just really wanted to write their own pieces. And then others were not familiar with writing at all, or just wanted to opt for me interviewing them.
And so, I would sit with each person, either in person or on Zoom a couple of times and just have conversations and then write up their pieces for them in their words. And then we'd just go back and forth with their pieces until they were happy with the editing processes of the other pieces. I would only really intervene around subject manager just to make sure that we had different perspectives, so the book had different stories really.
I mean, it was quite a large process. I thought, ‘This will be fine. I'll learn to be that so many interviews and so much back and forth with each writer. And then I write my chapter’. But it was huge amount of work. And lot of nights that I sat up really late. But now that it's out, it's like it's only a moment in time in a way, isn't it?
I'm really proud of it. And I am so excited that there will potentially be a person with chronic illness or a person that is disabled who may have not known whether they should or could be a parent, maybe because of the assumptions or the misconceptions that maybe they have dealt with due to other people or throughout their life. And hopefully this book will enable these people to choose to parent. I think that's the exciting part.
ASTRID: I'm also excited for people who either aren't disabled or aren't parents also reading this work. I'm a person who has chosen to not become a parent. And yet I really, I felt all the things, Eliza, reading these stories, because these aren't the stories that I have seen, even though I considered everybody in the anthology part of the broader community that I identify with and belong to. I think everybody, even if you're not disabled or not becoming a parent, should read this kind of thing.
A moment ago, you said the phrase, a moment in time, meaning you work when you stayed up late, et cetera. But the beauty of this, Eliza, is that books aren't a moment in time, books hang around, sort of podcasts actually, but books hang around and people will continue to discover this book over and over again, and hopefully make different decisions, which really gives me a great deal of comfort.
ELIZA: That's a very exciting thought. Thank you for that.
ASTRID: Now, the Forward is written by Jamila Rizvi. Jamila happens to be very different of mine and because we both have things wrong with our brains, we talk a lot about health, and bodies, and illness. And I cried when I read Jam's Forward ,and I realised that I don't ask about some things. I'm not sure if that's because I don't ask because I'm not a parent myself, therefore it doesn't occur to me, or that I have accidentally bought into the taboos surrounding parenting and what you're supposed to ask or not supposed to say, et cetera. And I guess I just wanted to share that personal reflection with the world and with everybody who listens to this podcast, because there's no end to how much we can all keep learning about each other.
ELIZA: I love her Forward, because, well, when she says that this book is exactly what she needs. I love that. I think she really highlights how having a disability or chronic illness in the home really adds to the diversity and the richness of the family and enables kids to learn about diversity, and be kind, and open and inclusive kids really. And I mean, they're the future. So I think that's aa really beautiful highlight from that.
ASTRID: They are our future. And kids with parents with disability are going to lead us to such a better future, Eliza.
ELIZA: Exactly.
ASTRID: My final question to you, you've just released this anthology and you've been a parent for more than seven years, in those seven years, what changes, if any, have you witnessed in terms of how the broader world thinks about parenting with disability?
ELIZA: Look, discrimination is still a big problem, that's for sure. I mean, parents within this book, for instance, one example comes to mind, like Debra Keenahan has achondroplasia
and she has dwarfism and parents and a child who are strangers to her, the child says, ‘Why is she so short?’ And the parent says, ‘Because she didn't eat her vegetables. And if you don't eat your vegetables, you'll become like her and you'll be like her’. And Deborah was just totally taken aback, and shocked, and said, ‘Excuse me, I do eat my vegetables’. And then spoke to the child. And because it wasn't the child's fault there. But this discrimination happens all the time and she states she gets photographed without her permission, her and her daughter, because her daughter also has dwarfism. And throughout the book, there's times where people have just said the most horrible things.
And again, I think that the real impact that I want to see and the change that I want to see is within the medical system. I feel like that's where the most discrimination happens. And actually, in the end, it really stops people from choosing to parent. Because as I said, we do trust medical professionals. And so, the change I want to see is within the medical system. I want to educate medical professionals and maternity wards and maternal health nurses. But in saying that I am seeing change unravel.
For instance, I just recently launched the book in Castlemaine, where I live, and it was filled with GPs, and nurses, and I didn't even invite them. They just saw that it was there and they came up to me and some of those nurses were actually a support for me because I had fallen over when I was pregnant. And they, in retrospect might not have said the right things, and they came up and just said, ‘You've taught us so much through this book’. So that just really, I was like, ‘Oh wow, we are seeing change’. And universities are writing and saying that they want to teach this in schools. So, the maternal health nurses have reached out. I mean, I just feel like we are seeing shifts, we are seeing changes, and hopefully a book like this will start to make some change and be the representation that I was so desperately seeking.
ASTRID: Eliza, you are making change. Thank you so much. And congratulations on We've Got This.
ELIZA: Thank you so much and thanks for having me.
