Recording: How does society treat parents with disability?

Descriptive transcript

So, everyone, thank you for joining us. Before we begin, I'd like to acknowledge that I'm at UTS today, so I'm on the land of the Gadigal people of the Eora Nation. This land was never ceded, and it's also land where people have been teaching and learning for 60,000 years. As a university built on Gadigal land, we pay particular respects to Elders past and present of the Gadigal people.

My name is Verity Firth, I'm the Pro Vice-Chancellor of Social Justice and Inclusion here at UTS, and it's my real pleasure to be joined today by the brilliant editor and contributing authors of the book We've Got This: Stories by Disabled Parents – Eliza Hull, Renay Barker-Mulholland, and Micheline Lee. I'll introduce them properly in a moment.

A couple of housekeeping items: today's event is being live captioned. To view the captions, click on the link in the chat or find it in the Zoom control panel. The captions will open in a separate window.

There will also be an opportunity for questions and answers. Please type your questions in the Q&A box in the control panel. You can upvote questions, and I tend to ask those with the most votes.

We've Got This is the first major anthology by parents with disabilities, written by 25 parents who identify as Deaf, disabled, or chronically ill. More than 15% of Australian households have a parent with a disability, but their stories remain largely unshared and rarely appear in parenting literature. This lack of representation reflects how rigid and conventional the template for parenting remains in our society.

Like all parents, the authors cover the highs and lows of their parenting journey – the complexities, joys, anxiety, and love. It also shows that the greatest obstacles lie in our society's attitudinal, physical, and social barriers.

So it's now my pleasure to introduce today's panellists, each of whom contributed their story to We've Got This.

First, Eliza Hull is a musical artist, writer, journalist, and disability advocate. She's also a contributor to Growing Up Disabled in Australia. 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.

Eliza Hull: Hi, thank you very much for having me.

Renay Barker-Mulholland is a proud Birpi-Daingatti woman living with her family on Wadawurrung country. Renay is disabled, having both mobility-limiting diseases, chronic pain, and psychosocial illnesses. She is a mother, writer, artist, and staunch intersectional feminist.

Renay Barker-Mulholland: Thank you so much for having me.

Micheline Lee is the author of the novel The Healing Party and has published essays in The Monthly and in The Best Australian Essays 2017. She has worked as a human rights lawyer and as a painter before taking up writing.

Micheline Lee: Great to be here.

Verity Firth: So my first question today is to all of the panellists, and I might start with you, Eliza. How important is We've Got This as the first major anthology to represent parents with disability, and what made you want to contribute your stories collectively?

Eliza Hull: Well, look, it is my belief that it's very important. The reason I feel that is because of the feedback that I'm getting from the book, especially people with disability reaching out, stating that for a long time they had had a lot of discrimination, especially in the medical system – people telling them that perhaps they shouldn't be a parent or that they couldn't manage.

So this book is really for them, to show them that it is possible, to show them that we as people with disability make great parents. That has been really incredible, just hearing that feedback.

Also, seeing the launch events and people reaching out within the medical field – GPs, maternal health nurses, people within the hospital and maternity wards – saying that this is such a great book for them to understand what it is to be a person with disability and to understand that there really has been so much discrimination in the medical system, and that they can start to make these changes. They're using the book as a tool to educate within the medical system.

For me, the reason that I put this idea to Black Inc. as a publisher to create this book was due to just that lack of representation. When I was pregnant with my first child, there just wasn't anything out there. I was really seeking a book that I could actually feel represented in and know what it would be like to be a parent with disability.

The only people that I could really lean on were people like my neurologist. When I even mentioned the idea of having a child as a person with disability, he straight away said that he didn't think it was a good idea and that he didn't think that I'd be able to manage. He worried about me falling over and was also concerned around my possibility of passing on my disability because I have a 50% chance. So I remember feeling very vulnerable and confused. If I had listened to my neurologist, I wouldn't have the two incredible children that I have, the wonderful family that I have.

So I knew that it was really time to make a book like this so that we could start changing some of these really entrenched assumptions about what people with disability can and can't do.

Verity Firth: It's really great to hear that it's getting traction already in the medical system. Renay, what about you? What made you want to contribute your story and how important do you feel this book is?

Renay Barker-Mulholland: I felt sharing my story was kind of a first. I don't think I had seen representation. I had become a parent before I became disabled, and there were so often representations of black motherhood or motherhood or parenthood in general. When I started experiencing things that pointed towards this idea that I had a medical condition, a disability, I started searching for those stories of representation because throughout history, surely there should have been some – there would have been parents with disabilities, whether they recognised it or not.

When I got the opportunity to share mine after realising that they weren't out there, it was like, I'm going to take every opportunity I can to do this because becoming a part of the disability community has been so empowering and so wonderful, and I really want to share that with other people.

Verity Firth: And what about you, Micheline?

Micheline Lee: It's just so valuable that Eliza has brought this book out with Black Inc. because there is that very strong stereotype of us as people with disabilities. We're so often seen as the perpetual child or the patient. In many ways, we're not expected to participate in the community. People congratulate me when they see me out and about: "Good on you for going shopping", "Good on you for catching a train". Expectations are particularly low when it comes to employment. And then when it comes to parenting, there's that questioning about whether you're fit to be a parent. In some cases, as Eliza mentioned, there is the active discouragement. So it's just time that our stories were heard. We need to dispel the myths and the stigma. I just wish this book had been around when I started parenting and I'm really proud to be part of it.

Renay Barker-Mulholland: Yeah, just my experience, even with my own medical team, having them reach out and say, "Oh, I saw the book launch" or "I heard you doing an interview about it", and knowing it's going directly to these people who have interactions with disabled parents but maybe have never heard their story or the honesty of their story, or maybe their patients have been too apprehensive to share because of the discrimination that they've faced. So to hear these medical professionals come to me and say, "I'm so glad I found this book", it's reaching audiences that I didn't expect it to, and that's been a really lovely benefit, I think.

Verity Firth: Yeah, I think that's really powerful, it's reaching those audiences. So Eliza, in the book you write, "What these parents show us is that parenting isn't black and white. There shouldn't be a template we all follow to the letter. It's about being creative and flexible – and children are so beautifully open to being adapted." We try to do that as well. So what are some of the stories you've heard from parents while writing this book, and how have they had to adapt or detour from what you call the template?

Eliza Hull: Yeah, I feel like as people with disability, we are set up really to be quite creative thinkers and adaptable anyhow. For instance, I have a physical disability, and so I can't get upstairs. If I'm at a building and I'm trying to think how do I get into that building, I have to think of another way – is there a door I can get through, or do I have to climb up? So again, I feel like we are already set up to be creative. That really feeds into parenting.

Within the book, there are stories – for instance, parents that are blind speak about trying to find the correct veterinary syringes to be able to measure the exact amount of formula, because that was quite hard for them to do. They then found a machine that they were able to use to mix formula. They use a pram – it's called a pram tows – that is harnessed around them and goes alongside them as they're walking, and they're able to pull it along because they have a guide dog or use a cane in front of them. Parents that are blind use vibrating packs that they can wear so that when their baby is crying, they're alerted to that; also visual alarms that go off in the night; parents that have cut off change table legs to adapt to the right height; parents that have certain cots that they then modify so that if they're a wheelchair user, they can get their baby in and out.

I actually think that pretty much every single story really shows ways that we have to be creative and have to be flexible in the way that we parent, and I think it really shows just how capable we really are at implementing those creative strategies.

Verity Firth: It's interesting too, the uses of different technology presumably as well to aid. I think that's something that we're lucky it's the 21st century.

Eliza Hull: Very true.

Verity Firth: Renay and Micheline, what are your thoughts on the template that society has for parents and parenting? Micheline, what do you think?

Micheline Lee: One that I was very aware of is the view in society that to be a good parent, you have to be independent, you have to be able to do things on your own, and that you'd be less fit to be a parent if, because of your disability, you need help yourself. I think that view is really damaging, not just for people with disabilities but for the whole of society, because every one of us has vulnerabilities – it's inherent in the human condition. And then there are also the society-made vulnerabilities caused by a non-inclusive society and the inaccessible built environment. With the right support, people with disabilities can be independent, we can be autonomous.

So I needed help with a lot of the physical tasks when my son was younger. I had to have the right equipment. I also needed personal assistance to lift my son, to do many of the other physical tasks. Fifteen years ago, you could only get personal care; you couldn't get the assistance with what you needed to do as a parent. The government services that I did get to help me with my daily assistance would make a really clear demarcation: "If you're going to be a parent, well, that's your responsibility and we can't help you with it. We can, though, help you with your individual disability needs, but not your role as a parent." Fortunately, now we have the NDIS and a much more open attitude towards participation and inclusion.

So we all benefit from being more responsive to vulnerability. I actually asked my son before this forum whether there was anything that he wanted me to say for him about what it's like growing up with a parent with a disability, and he said, "Well, it's great to be able to skip queues sometimes," but then he also said that through having a mum with a disability, he has gained more understanding of his own struggles and other people's struggles.

Verity Firth: Isn't that lovely? Renay, what about you? What are your thoughts on the template that society says this is how you should parent?

Renay Barker-Mulholland: Well, if I'm being polite, I'd say it's not very kind. If I'm being myself, I'd say it's a load of crap – and that goes for all parents too, not just parents with disabilities. We're fed this idea of what babies and children should do, and like the other presenters were saying, the practicalities of parenting are so often focused on, and so your value as a parent gets diluted down to, you know, did you make the school lunches or did you change the nappy? Pretty early on in my journey of becoming a disabled parent, I remember the words of the great Maya Angelou, who said something along the lines of "People may forget what you said, but they'll never forget how you made them feel," and I take that into my approach of breaking that mould of what we should and shouldn't do, because my children may forget that I didn't make dinner, that a support worker came and made dinner for me, but they'll never forget the conversations we had around dinner or how we felt or the interest I put into them.

I was really lucky in that when I had my very first child, who happened to be born with a disability, he came home and forced me to look at things differently because his disability meant that if I parented in the traditional way, it was quite dangerous for him. So I was forced from the beginning to look outside the box. When my disability was developing and he was fed by a tube, in the middle of the night my partner would get up and start the tube feed, and he could see how tired I was and how in pain I was, so I'd fall asleep and he'd hold the expresser – he'd express my breast milk while I was asleep because he knew that I needed the sleep more than I needed to be awake. So he would be holding one hand on the tube feed for our child and one hand on the expresser for me. It was these adaptations and things that we naturally just sort of develop that set us down that path of breaking that mould. It sets up so much expectation, and whether you're disabled or not, that expectation shouldn't cause you distress. So I was so glad to break that mould.

Verity Firth: And what love your husband or your partner has for both you and your child. It's beautiful.

Renay Barker-Mulholland: Oh, yeah, don't get me started.

Verity Firth: So Renay, in your piece you talk about your journey to feeling empowered to take up space as a First Nations disabled person. How have you used this to challenge stigma?

Renay Barker-Mulholland: I think just existing and being proud and loud about it is a way that I have control to take up that space, and being proud to represent being a First Nations person and being sort of semi-public in the way that I do that so that people can get it – because some people have never even met an Indigenous person before. Social media is a really wonderful tool to be able to do that, where people with disabilities have control over their narrative and control over what they share. I know that's a very common thing for the experience of disabled parents – that they, like Eliza's experience, from the get-go get told, "No, no, this is going to be too hard for you." So the value in sharing your story on places like social media or in discussions like today or in books like We've Got This is so important because you have to see it to be it. What it would have meant to me to pick up a book when my child was first born with a disability, even before I became disabled – to be able to pick up a book and say that there is an option, there is a difference, there is representation. Seeing yourself identified is a really powerful tool, I think.

Verity Firth: I'm reminding people that there is an opportunity to ask questions, so please – oh, we're just getting some. Good. Oh, now they're all flowing in. Fantastic. So we do have a number of questions in the chat. Whilst they flow in and people maybe have a look at the questions that have been posed and vote for the ones they most want me to ask, I might just come back to you, Micheline. So your parenting journey is actually through adoption, and of that journey you write, "I'm not saying it's right to pretend you're something other than you are in order to be accepted, but the rules are unfair." What was the impact for you to have to prove your worthiness throughout discriminatory systems and processes?

Micheline Lee: Okay, well, I'll explain a little bit about the inter-country adoption system. It takes years and there's so much information that you have to give. First you are approved at the domestic level, and then you have to be approved by the countries overseas as well. A lot of the countries would not accept any potential parents with disability, and just a few of the countries would accept parents with mild disability. My disability isn't mild – it's a motor neurone severe disability and it's also degenerative. I had to minimise my disability in order to become a parent.

It's not only in the parenting area that I've had to do this. I think a lot of people with disabilities have had to fit in, and that's how I've managed in my employment. So it was something that I was actually very accustomed to, but learning about the social model of disability has really helped change my life – that the problem isn't your disability, the problem is the non-inclusive society that wasn't made for people with disabilities.

The other thing that really helped me change my approach was having my son, Mark. He's now 21 years old and we adopted him as a baby. People are always curious about us, not just because of my wheelchair but also because, in the end, a Darwin boy became available, so he's from a Western background and I'm a Malaysian immigrant.

Around the age of seven, Mark started to be affected by other people's attitudes towards us, and I could see it in the schoolyard that he became ashamed and didn't want to be seen with me when I picked him up from school. It all came to a head one day when I fell out of my wheelchair at his school in front of his peers. I was sprawled, twisted on the ground and everyone crowded around me, and I had to be picked up off the ground by school staff. I knew Mark could see what was happening, but he didn't come over to help me. When I did catch up with him, I got really angry with him. I imagined that he was ashamed of me, but then I realised it was my own inherited shame at being different that was the problem. Seeing that, I just felt I couldn't let him inherit that shame as well, and it made me determined to change and to show how important it was to be proud of who you are.

Verity Firth: Okay, I'm going to go to an audience question. Sophie Yates has talked about the NDIS. She's picking up on your point, Micheline, about the NDIS having a much more open attitude towards participation than previous systems. But she's also heard in her research that some women don't feel well supported in their parenting role by NDIS. Does the panel have any reflections on this? Eliza, I see that you do.

Eliza Hull: Yes, I think you do too, Renay, is that right? Your hand's come down though. Oh, I just don't want to be a hog. Sorry, I'll go quickly and then we'll go to you, Renay.

I guess I just want to say from my personal experience, I have really struggled with the NDIS and parenting, and it's something that I'm really trying to advocate for. For instance, when I just had my second child – he's two in two weeks – all I was seeking was an adapted baby bath so that I could safely give my baby a bath. Because my disability, whilst it visually manifests mostly in the way that I walk and move, it affects my whole body and my hands and I have weakness and I shake. So I just wanted a simple bath that I had found online. I was really excited and just said to the NDIS, "Is it OK if we put that through as an NDIS cost?" and I was met with, "No, that's not going to be possible." I just didn't understand because it relates, in my opinion, so much to my disability and in reaching my goals. My goal is to safely give my child a bath and to be a parent, but they saw parenting as separate to my disability.

That was just one example, but there have been many. Again, I wanted to have a way that I could be in the bath with my baby – another adaptive technology item – but again, that was just met with no. So I found it really difficult to have parenting included in my plan in any way, and again, it's something that I really want to advocate more for.

But I think, Renay, you might have the opposite experience, is that right?

Renay Barker-Mulholland: No, unfortunately, I've got a very similar experience to yours in that there is this very clear difference or very clear push away from supporting you to be a parent. Especially as a parent of children with disability as well, they don't quite understand – or I don't know if it's that they don't understand, but they don't want to see the whole picture. It's very individual and it doesn't take into account the fact that parenting is my life, it's what I wanted to do, it's a huge part of my world. So for that to not be included seems really – it takes away control and choice again of people with disability. Unfortunately, it's my experience too.

Verity Firth: So, Micheline, you think it's a bit better, don't you? What has your experience been?

Micheline Lee: It's better in theory, because in the past it's actually been policy, official policy, that you can help the person with their individual needs as a person with disability, but not their parenting. But with the NDIS, the theory is great. The theory is that the NDIS is supposed to further the objectives of the International Convention on the Rights of Persons with Disabilities, and one of the rights being protected by the convention is to get the adequate support you need in order to be a parent as a person with a disability. It is very sad to hear that there is still a lot of catch-up that has to happen in the NDIS as far as the attitudes go.

Verity Firth: Marcella Hart has a question around Disability Inclusion Action Plans at council level: what role can the Disability Inclusion Action Plan at council level help parents with disability? Who would like to take this one first?

Renay Barker-Mulholland: I'll take this one. Thank you for asking, Marcella. I think it's really important that things happen on a very local scale, because that's the best way to give people access within their local community. If everybody did that, then we'd be much better.

My advice would be to make sure that parents with disability are involved in the creation of that action plan. Be open to co-design with people with disability from the ground level, from the very beginning, and also pay them to do this. This is a really big thing for me. If I could get a gig with the local council, talking to them about disability inclusion and parenting, it's accessible, it's a great way to help the community. Anyway, I'm getting off track, but have them be involved from the beginning and really don't be afraid to do things differently. Even if something's been happening the same way for 20 years, take a chance and do it differently, because if you're listening and responding to the needs of people with disability, I think you're pretty on the right track.

Verity Firth: And I don't think it's off topic to talk about paying people for their expertise either. If you're actually asking people to give time and expertise to a process, then absolutely it should be paid.

Eliza Hull: Yeah, I just want to echo what Renay was saying – co-design and paid co-design is definitely the thing to do. Also, education. For instance, maternal health nurses are really your point of contact. Parenting can be quite isolating, and for a parent with disability I think that is exaggerated. So I think just educating maternal health nurses about disability is definitely one step in the right direction. For instance, I know Deaf parents that will have to go to their maternal health nurse and there's not an interpreter there. Those kind of changes are really what needs to happen, and I think that comes from that ground level education that then feeds into accessibility, to make sure that these services are available, but not only available – available in a way that is inclusive and accessible.

Verity Firth: This is actually quite a nice segue, because you're talking about education of nurses and support systems, but David Yates has asked a question about the education system more broadly. Micheline, Renay and Eliza, how has the education system made efforts to include or exclude your parental involvement at school and beyond? How about other parents? Micheline, can we go to you first?

Micheline Lee: Yes. There's the need for something actually formal and systemic within the school system to recognise parents with disabilities and to include them. Too often it just depends on whether you're lucky enough to come across a teacher or a principal who are open-minded. I had many experiences where, in order to go and see my son at a school play, I had to fight for access because it was in an inaccessible venue, and other forms of inclusion. I think that the schools, particularly state schools, are so poorly funded in this area that the teachers in the system are very much at sort of survival level, and they often see the need to include a parent as just being something which is extraneous.

Renay Barker-Mulholland: Poor. My child, like I mentioned, was born with a disability and went through his first year of school, and that was when I had just developed my disability. I found my experience with this one personal school to be very dismissive. So we're actually homeschoolers – we've been homeschooling for eight years now, I think. My interaction with the education department now is through their homeschooling division, and it's been nothing but wonderful to support my children to learn the way that they want to. Obviously, it gives us lots of opportunities to engage in their learning and engage in their schooling because we can pick, you know, is this event accessible, is this going to be okay for mum to get along to, or can only dad go?

We've been very privileged to be able to homeschool our children, but I do recognise that the experiences – I think I mentioned in the book the story of trying to take my eldest child to an after-school activity that they had been really looking forward to, and I was so excited because I was able to do it independently and get there. I think it was one of the first trips out I had alone in a wheelchair with just me and a kid. I got there and it was literally just the doorway that I couldn't get into to get him because it was not wheelchair accessible. I'd called ahead and been assured that, "Yes, you'll definitely be able to get in," but I wasn't able to get in. It was just like a smack in the face of, you're never going to be able to even have the normalcy of dropping your kid off at an after-school curricular activity. It's one of the most basic events that happen in school. If my child had been to that school, I wouldn't have been able to access the area where they have meetings or performances. In their auditorium I couldn't access. It really solidified my idea that we'd made the right choice for our children to seek outside of that, but it made me sad that maybe so many people are isolated in that. School communities can be wonderful and can be really inclusive and supportive and where you can connect with other people. So to have that experience was really disheartening for me.

Eliza Hull: Yeah, look, I feel like we've got a long way to go, but to be honest, the experiences that I've had so far – my daughter's still only in year one this year, so we've only had just over a year and a bit of experience, but they've been really great. For instance, they're now putting to council that there's an accessible car park put right out the front of the school because I have had trouble – I've fallen over because they have an area that you have to get over with a big step, and I've been struggling to bring my two-year-old to pick my daughter up from school. They've been witnessing that, and without me even coming to them, they've put an application in and said, "That's our priority, we want to make sure we have an accessible car park and that you can access the school." They also sought my advice around what kind of disability representation they have in their books, their picture books in the library, and they also want me to come and talk to the kids. So I think they're really making sure that disability is a priority and that it's not something that's forgotten. So I've had really great experiences.

In terms of the second part of the question around the other parents, I still feel like – and again, I don't blame anyone for this, but I think it is a lack of representation in the media, and that actually feeds into this idea that disability is a negative, a deficit, we shouldn't say the word disability, and so often parents feel very uncomfortable with using the word disabled or disability, and sometimes that actually makes them not even want to come and have a conversation. I can really feel that. Or if a child is just curious and says to the parent, "Why does she walk like that?" or "Why does she fall over?", the parent will often either tell their child to shh or make up a lie or an excuse. For instance, I had a parent say that I was in a bad accident, which I speak about in the book. Again, I don't blame the parent, but I think that it comes down to lack of representation, lack of conversations around disability, and so therefore this idea that disability is something to be feared and that we shouldn't speak about it. Whereas I actually think it's a good thing for children to feel that they can be curious in a kind way, because otherwise it just creates more and more stigma that just then keeps feeding.

Verity Firth: So the next two questions are related. I'll start with Elizabeth Starr. She's saying that in her experience as a support person for people with a disability who are involved in care and protection matters, many parents with a cognitive impairment have their newborn child removed from their care within days of the birth. They then have to fight to have their child returned to their care, which rarely happens. She's interested in whether that as an issue is addressed in your book. Eliza?

Eliza Hull: Yeah, that's right. Sixty percent of parents with intellectual disability have their child removed. It's a huge, huge issue. There are parents within this book that have intellectual disability. Two parents have intellectual disability and speak about having their child removed. They went to, I guess, a parenting education service that is open to all parents, and as soon as they went into this parenting option – they had sought advice from the nurses at the hospital that it was a good idea – and Jacqueline, the mother, said, "Yeah, I think you should go, I think it would be a great thing just to go for a couple of weeks." Unfortunately, the people within this system rang child protection, and they felt very set up, they felt like they were set up to fail straight away and without actually having the supports in place and the education to be the parents that they knew they could be.

Luckily, what actually tends to happen is if you don't have that very strong family support system, then you just lose your children or child. Luckily, they did have great family support and so they were able to keep their child. Now he's an incredible – I think he's nearly seven years old now – and he was just recently at the Melbourne book launch and he's a bubbling, beautiful child and they're incredible parents.

When they actually had to go through the court system, because child protection were trying n