Recording: How does society treat parents with disability?

VERITY FIRTH:So everyone, thank you for joining us. Before we begin, I'd like to acknowledge that I'm at UTS today, so I am 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 and I think as a university built on the 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 & 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 first. The first item is that today's event is being live captioned, so to view the captions, you click on the link that's in the chat and you can find it in the bottom of your screen in the Zoom control panel. The captions will then open up in a separate window.

 

The other thing is there will be an opportunity for Q&As, or for questions and answers, for everyone participating in this session today. So if you do have a question, please type them in the Q&A box, which again is in that bottom control panel of your Zoom. You can then upvote relevant questions that others have asked, so it's a really good opportunity, and to be honest, I tend to ask the questions that get the most votes and they get pushed up towards the top of the list, so do engage in the questions. But if you are asking a question, please try to keep them short and to the point and relevant to the topic that we're discussing here today.

 

So 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. Welcome, Eliza.

 

ELIZA HULL:  Thank you very much for having me.

 

VERITY FIRTH:  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. Welcome, Renay.

 

RENAY BARKER‑MULHOLLAND:  Thank you so much for having me.

 

VERITY FIRTH:  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. Welcome, Micheline.

 

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, but beginning with Eliza?

 

ELIZA HULL:  Well, look, it is my belief that it's very important and 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, and so this book is really ‑ for them really to show them that it is possible, to show them that we as people with disability make great parents and so that has been really incredible just hearing that feedback.

 

Also, seeing the launch events and also again people reaching out within the medical field, so GPs, maternal health nurses, people within the hospital and maternity wards ‑ again, just reaching out and saying that this is just such great ‑ 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 and so they're using the book as a tool to educate within the medical system.

 

For me the reason that I had put this idea to as a publisher create this book was due to just that lack of representation, just feeling like when I was pregnant with my first child there just wasn't anything out there that ‑ I was just really seeking a book that I could actually feel represented 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 and when I even mentioned the idea of having a child as a person with disability, he straightaway 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 50% chance. So I remember feeling very vulnerable and confused and if I had have 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:  Mmm. 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:  Let's see. I felt sharing my story was kind of a first. I don't think I had seen representation ‑ so I had become a parent before I became disabled and there was so often representations of black motherhood or motherhood or parenthood in general and when I started experiencing things that sort of 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, and then 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. Like people congratulate me when they see me out and about, "Good on you for going shopping", "Good on you for catching a train" and 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 and 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. And I just wish this book had been around when I started parenting and I'm really proud to be part of it.

 

VERITY FIRTH:  Renay, you have something else to add?

 

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 ‑ a 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" ‑ "adaptive". Adapted, you 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, you know, as people with disability we are set up really to be quite creative thinkers and adaptable anyhow. You know, for instance I have a physical disability and so I can't get upstairs and if I'm at a building and I'm trying to think how do I get into that building and I have to think of another way, you know, 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. So I feel like that that really feeds into parenting.

 

Within the book there are stories, you know, for instance to parents that are blind that speak about, you know, 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 then able to use to mix formula. They use a pram ‑ it's called a pram tows that actually is harnessed around them and goes alongside them as they're walking and they're able to kind of pull it along because they have a guide dog or use a cane in front of them, so there's that.

 

Also 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, you know, 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. And I think that view is really damaging not just for the 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 and 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, had to have the right equipment. I also needed the personal assistance to lift my son to do many of the other physical tasks and 15 years ago you could only get personal care, you couldn't get the assistance with what you needed to do as a parent. So the government services that I did get to help me with my daily assistance would make a really clear demarcation that "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 with 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, "Oh, 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, so 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, that 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.

 

And 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 sort of take that into my approach of breaking that mould of what we should and shouldn't do because my children may forget, you know, that I didn't make dinner, that a support person came and made dinner for me, but they'll never forget the conversations we had around dinner or how we felt or the interest that I put into them.

 

But I was really ‑ I think 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 of how do we ‑ and it reminds me of ‑ I mean, I feel like it's a long time ago. He's only 14, so it's not that long ago but, you know, when my disability was developing and he was fed by a tube and so in the middle of the night my partner would get up and he would start the tube feed and he could see how tired I was and how in pain I was and so I'd fall asleep and he'd hold the expresser. So he'd express my breast milk while I was asleep because he knew that I couldn't ‑ 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 then one hand on the expresser for me.

 

And it was like these adaptations in these things that we naturally just sort of develop that set us down that path of breaking that mould and not ‑ because it sets up so much expectation and whether you're disabled or whether you're not, that expectation is just ‑ it's, yeah ‑ it shouldn't be ‑ it shouldn't cause you distress. So I was so glad to break that mould.

 

VERITY FIRTH:  Mmm, mmm. 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, you in your piece talk about your journey to feeling empowered to take up spaces of First Nations disabled person. So 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 promoting ‑ or not promoting myself, but 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 ‑ because, I mean, some people have never even met an Indigenous person before, so 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 is that they, like Eliza's experience ‑ from the get‑go they get told, "No, no, this is going to be too hard for you" and 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 ‑ pardon me ‑ to be able to pick up a book and say that there is an option, there is a difference, there is representation, it just ‑ seeing yourself identified is a really powerful tool I think.

 

VERITY FIRTH:  Thanks for that, Renay. I'm reminding people that there is an opportunity to ask questions, so please ‑ 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.

 

So whilst they flow in and whilst 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." So 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 and first you are approved at the domestic level and then you have to be approved by the countries overseas as well and 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. So my disability isn't mild, it's a motor neurone severe disability and it's also degenerative and I had to minimise my disability in order to become a parent.

 

And I guess 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.

 

And 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 and my ‑ so I've written about the story that really helped change things for me.

 

So around the age of 7 mark, my son, started to be affected by other people's attitudes towards us and I could see it in the school yard that he became ashamed and didn't want to be seen with me when I picked him up from school and it all came to a head one day when I fell out of my wheelchair at his school in front of his peers, so I was just like sprawled twisted on the ground and everyone crowded around me and I had to be picked up off the ground by school staff and I knew that Mark could see what was happening, but he didn't come over to help me and 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. And 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:  That's, yeah, so true. Okay, I'm going to go to an audience question. So Sophie Yates has talked about the NDIS. So she's picking up on your point, Micheline. She says, "Micheline mentioned that the NDIS has had a much more open attitude toward participation than previous systems, but I've also heard in my research that some women don't feel well supported in their parenting role by the 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 has come down the ‑‑

 

RENAY BARKER‑MULHOLLAND:  Oh, yes, I just don't want to be a hog.

 

ELIZA HULL:  Sorry. I'll go quickly and then ‑‑

 

VERITY FIRTH:  Then we'll go to you, Renay.

 

ELIZA HULL:  I guess I just wanted 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 was ‑ just had my second child, so he's 2 in two weeks, all I was seeking was an adapted baby bath so that I could safely give my baby a bath and 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 just a simple bath that I had found online.

 

I was really excited and just said to the NDIS, "Is it okay if we put that through as an NDIS cost?", and I was met with, "No, that's not going to be possible". And I just didn't understand because it relates, in my opinion, so much to my disability and in reaching my goals, so my goal is to safely give my child a bath and to be a parent, but they saw parenting as separate to my disability.

 

So that was just one example, but there have been many when it comes to ‑ again, I wanted to have a way that I could be in the bath with my baby, so 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. Unfortunately, I've got a very similar experience to yours ‑‑

 

ELIZA HULL:  Okay, right.

 

RENAY BARKER‑MULHOLLAND:  ‑‑ in that there is this very clear difference or very clear push away from supporting you to be a parent. So having somebody ‑ and 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 and it's ‑ yeah, 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 which is being protected by the convention, the international convention, is to get the adequate support you need in order to be a parent as a person with a disability and 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:  Mmm. Yes, that is a pity, isn't it? And I agree with what Renay was saying. If parenting is what you do and it's what you want to do to fulfil your goals, I don't understand that dichotomy. It doesn't seem right to me.

 

Marcela Hart, her question is around Disability Inclusion Action Plans at council level and she said, "What role can the Disability Inclusion Action Plan at Council level help parents with disability?" Who'd like to take this one first? Micheline, your hand is still up, but was that from the last one? 

 

MICHELINE LEE:  That was from the last one.

 

VERITY FIRTH:  Okay, Renay?

 

RENAY BARKER‑MULHOLLAND:  I'll take this one. Thank you for asking, Marcela. 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.

 

But my advice would be to make sure that parents with disability are involved in the creation of that action plan, so be open to ‑ oh, I can never remember what the word is, but it's creation with people with disability from the ground level, so from the very beginning, and also pay them to do this. This is a really big thing for me, but 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. Don't be afraid to ‑ I mean, I'm not asking anyone to do anything dangerous, but even if something has 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 a bad ‑ I don't think it's off topic to talk about paying people for their expertise either. I think from those sorts of situations where you're actually asking people to give time and expertise to a process, then absolutely it should be paid. Oh, Eliza.

 

ELIZA HULL:  Yeah, I just wanted to echo what Renay was saying that, yeah, co‑design and paid co‑design is definitely the thing to do and also education. Like for instance, you know, maternal health nurses are really your point of contact. Parenting can be quite isolating 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 the maternal health nurse and there's not an interpreter there. So those kind of changes are really what needs to happen and I think that 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:  So this is actually quite a nice segue because you're talking about education of nurses and support systems, but David Yeats has asked a question about the education system more broadly. So 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?" So Micheline, can we go to you first?

 

MICHELINE LEE:  Yes. So there's nothing ‑ I think 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 were lucky enough to come across a teacher or a principal who are open‑minded and certainly 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, yes, other forms of inclusion and I think that the schools, particularly state schools, are so poorly funded in this area that the teachers and the system are very much at sort of survival level and that they often see the need to include a parent as just being something which is extraneous.

 

VERITY FIRTH:  Renay, what's your experience been like with the education system?

 

RENAY BARKER‑MULHOLLAND:  Poor. No, so my child, like I've mentioned, he was born with a disability and he 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 were actually home schooling. So we've been home schooling for eight years now I think and for me my interaction with the Education Department now is through their home schooling division and it's been nothing but wonderful to support my children to learn the way that they want to and 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, you know, can dad go.

 

So we've been very privileged to be able to home school 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 I was able to get there and it was like ‑ I think it was one of the first trips out I had alone in a wheelchair with just me and a kid and 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. And, you know, I'd called ahead and been assured that, "Yes, you'll definitely be able to get in", but I didn't, I wasn't able to get in.

 

And 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. Like it's one of the most basic sort of 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 like performances. In their auditorium I couldn't access. So it was really like ‑ it 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. You know, school communities can be wonderful and can be really inclusive and really supportive and where you can connect with other people. So to have that experience was really disheartening for me.

 

VERITY FIRTH:  Yeah. Eliza, do you have anything you want to add about the education system?

 

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 is still only in year 1 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 that is 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 kind of get over with a big step and I've been struggling to bring my 2‑year‑old to pick my daughter up from school.

 

So 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.

 

I think 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 and 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:  Mmm. So true. So the next two questions are related. I'll start with Elizabeth Starr. She's saying 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." So she's interested in whether that as an issue is addressed in your book. Eliza?

 

ELIZA HULL:  Yeah, that's right. So 60% of parents with intellectual disability have their child removed. It's a huge, huge issue and 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, like a parenting ‑ I think it was like a parenting education service that is open to all parents and as soon as they went into this, I guess, parenting option they had sought advice from the nurses at the hospital that it was a good idea and Jacqueline, the mother, they said, "Yeah, I think you should go, I think it would be a great thing just to go for a couple of weeks", and unfortunately the people within this system rang child protection and they felt very set up, they felt like they were set up to fail straightaway 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 if you don't have that very strong family support system, then you just lose your children or child and 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 7 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 not only once within that first instance, they kept coming back, coming back and trying to say that they weren't fit to be parents ‑ when they actually went into the court, the judge apologised and said that they shouldn't have been there and that he couldn't believe that they had to prove that they were capable as parents.

 

There's also a story within this book from Heather Smith and she had her child removed and, yeah, she wasn't able to keep her child and she says that ‑ I mean, it's absolutely devastating and it's affected her whole life and her daughter is now a teenager and they're starting to connect but she's still not called mum and she feels that there really needs to be more advocacy in this space for more education, more support for people with intellectual disability because as I said earlier, parenting is hard, it's really hard, and where do you learn to be a parent?

 

I remember bringing my first child home and just looking at my partner and just saying, "What do we do?" I think as a parent with an intellectual disability there are obviously added complexities there. But parenting is developmental, like it's a constant learning curve, and without this proper education and proper support, we really are setting up parents with intellectual disability to fail. So I think it's a huge issue, it's a human rights issue and it needs a lot of advocacy for greater change.

 

VERITY FIRTH:  Yeah. Renay, you had your hand up.

 

RENAY BARKER‑MULHOLLAND:  Oh, I was just going to mention that I met Jacqueline and Gary and their son at the launch for We've Got This and the first thing I noticed about them was how lovely and happy their child was and engaged and, you know, it's really ‑ like you say, Eliza, it's a human rights issue that people are having their children taken away with no acceptable reason at all and, you know, how much trauma that can cause somebody to have that happen.

 

ELIZA HULL:  I think child protection is there for a reason and there are instances where it isn't safe for a child to stay with their parent, but that can happen for any parent, whether you have a disability or not.

 

RENAY BARKER‑MULHOLLAND:  Exactly, it's not determined by disability.

 

VERITY FIRTH:  Mmm, mmm. Emily Wailes is wondering whether there are good examples of children's books with resources that represent people with a disability or parents with a disability well. Does anyone have some good examples you could recommend?

 

ELIZA HULL:  Sorry, is that the question around ‑‑

 

VERITY FIRTH:  Yes, the question is, "Eliza mentioned representation of disability in children's books and more generally. In addition to We've Got This, does the panel have recommendations of books or resources that represent people with a disability and parents with disability well?"

 

ELIZA HULL:  Well, I've got a children's book coming out in September, so hopefully that will be ‑ it's called ‑ I don't know whether I'm allowed to say this, but it's called Come Over to my House and it's about going inside different houses that have parents with disability. So it's kind of a We've Got This, but for children because, again, I think there really is a lack of representation of disability in picture books and books more widely.

 

I really like reading What Happened to You, it's a children's picture book, and some people within the disability community ‑ you know, it's creative discussion. That's how I should ‑ and because it's about a child that has limb difference and all the children at school are constantly saying, "What happened to you?", "What happened to you?", "What happened to you?" And at the end the child just wants to be a child and wants to play and have fun and talk about something else and so then right at the end the children start to converse in a way that speaks about, you know, things like sharks and dinosaurs and they start to, I guess, not ‑ you know, I guess maybe not even see the disability.

 

And I think some people have found that problematic because if we, I guess, start to say we don't see your disability, I think that that is problematic because it kind of creates more stigma around disability. Like I think that we should move into the space of "I see your disability, but I also see your incredible pink hair" or ‑ you know. But I think from a children's perspective it does it quite well and, yeah, it's a good book in my opinion.

 

VERITY FIRTH:  Renay or Micheline, do you have any other suggestions?

 

MICHELINE LEE:  I can't think of any right now I have to say, which is quite an indictment, isn't it, and shows just how much we really needed this We've Got This. 

 

VERITY FIRTH:  Yes.

 

RENAY BARKER‑MULHOLLAND:  I'm finding that representation is coming for my children especially from outside sources of me of course because I'm the mum that always goes on about accessibility and intersectionality and all that stuff, so much so that they end up rolling their eyes and go, "Yeah, okay mum, I get it."

 

But I'm seeing so much representation of disability within their lives. And so I'll never forget the moment when my youngest child was probably about 4 and they're very obsessed with video games, video games is their love language, and they came running into me and went, "Mum, mum, quick, have a look at this" because one of the characters in the video game, one of them used a mobility aid, a wheelchair, and so they were so excited to see this representation within something that they enjoyed so much because, you know, it's been a part of their life from the beginning. So I'm seeing so many more representations of disability for them, so hopefully that turns into more representation for people with parents with disability.

 

But yeah, it's a very ‑ children often do step into that I don't see your disability, so I think it's really important ‑ or sorry, I'll rephrase that, literature or resources that are aimed at children are aimed at seeing everybody as equal and it can be difficult when ‑ it's not that everyone is equal, but everyone has different access needs is what I say to my children and they have different access needs and that's the same goes for whether or not you have a disability, you have a preference for the way that you need things to be. So yeah.

 

VERITY FIRTH:  Mmm.

 

ELIZA HULL:  In terms of adult books, this Sitting Pretty is a great one by Rebekah Taussig and Demystifying Disability is a really good one as well. And Growing Up Disabled in Australia of course, a great anthology.

 

VERITY FIRTH:  So we're almost out of time, five minutes left, two quick questions left to ask the panel before we go. I'm going to come to you, Eliza, because you've now taken We've Got This from podcast, now it's a book. Will you continue with the project and where to next?

 

ELIZA HULL:  Yeah, look, I think I'm very passionate about this and of course I'll keep going. It's going to be an overseas version that's coming out and so that is likely to come out in February next year and so that will include 10 parents from the Australian version and then 15 parents from overseas, so including British or UK contributors and American contributors.

 

VERITY FIRTH:  So you're going global.

 

ELIZA HULL:  So yes, another book is on its way, so yeah, and then who knows after that. Hopefully, yeah, this book continues to reach the right people.

 

VERITY FIRTH:  Brilliant. And the last question to all of you ‑ I'm just going to ‑ so what would you like people to do? You've shared your stories with them. Hopefully the book is sitting now in the hands of the medical profession and the community support workers, and so forth, but what would you like people to do having sat and listened to this webinar and read your book? Micheline, what would you best like people to do?

 

MICHELINE LEE:  I think we need to really remove that stigma that having a disability and being dependent on help means you shouldn't be a parent. I think we need to recognise that we need to have that right to support to be the best parents that we can be and there's so much truth in that saying that it takes a village to raise a child. We need to do so much better in relation to people with cognitive impairment. Australia needs to make the commitment to recognise that people with cognitive impairments should always have the right to make their own decisions with supported decision making.

 

And I think that behind that, it's also just recognising that living with a disability is enriching and it really makes me smile when I think of my son saying that having a mum with a disability has helped him be more understanding of his own struggles and others' struggles.

 

VERITY FIRTH:  That's beautiful. It's so hard to teach that too, right, so he's got it completely down pat, fantastic. Renay, what would you like other people to do?

 

RENAY BARKER‑MULHOLLAND:  I would really love other people to fight for inclusion the way that people with disability do. So a very quick example, I had organised with a friend to go take our kids out together to do something and she texted me beforehand to say, "I've checked and it's wheelchair accessible and there's a quiet room if you need it and there's this and there's this and is that still okay for you to come along?", and I was so grateful for her doing that, doing that legwork sort of ‑ not to use the wrong kind of term, but doing that work to be confident to tell me that when you arrive here the only thing you have to worry about is your children and yourself, you know, you don't have to worry about facing those societal barriers, like Micheline mentioned before, the social model of disability that she was helping me to remove those barriers so I could come along and enjoy that. And I think that's really important for other people, even if it doesn't impact you directly that you're aware of, if you're in a planning meeting say, "Have we thought about access, have we thought about including people to access ‑ to find out about this?" So don't be afraid to ask the questions on our behalf is what I think I would suggest people do.

 

VERITY FIRTH:  That's fantastic. That's a great tip, actually. And Eliza, you get the last word. What would you like people to do?

 

ELIZA HULL:  I guess I hope people change their minds, I hope people change their attitudes. I guess, you know, for me I face a lot of discrimination out in society, so I think that that's ‑ yeah, just that wider societal assumption about being a person with disability and being a parent. I hope that that starts to really shift. I hope that we see more education in the medical system and for the department in terms of parenting with intellectual disability. As I said, I do truly believe that there needs to be a lot of changes there. Yeah, I just hope that this book reaches pockets of spaces in Australia that might not have ever really thought about this, that might not have ever known that this is a big issue and that we do still have a lot to change when it comes to being a parent with a disability.

 

VERITY FIRTH:  Well, thank you to all of you. That was a great panel and really thank you for giving up your time today to talk to us all and thank you to everyone online who joined us. I'm sure you found it a really fantastic panel as well and please come again next time. We will send the link out which will have a recording of this event, so if you want to send it around and spread the word, please do so. Otherwise, I'll see you at the next event. See you, everyone.

 

ELIZA HULL:  Thank you so much.