Being a disabled parent is a rebellious act. Disabled people should have the same right to parent as anyone else, but often when we decide to start a family we are met with judgement and discrimination.
We are questioned rather than supported. We have to push up against the medical system, which is particularly problematic for disabled people. And we have to confront how ableist society’s model of parenting is, even in the twenty-first century. Yet, despite all this, we still choose to parent. And we are damn good at it too!
I became a parent six years ago. I’d always had an innate drive to have a family. As a child, I wrote in my diary that one day I would have children. My parents always hoped I’d have children. When I told them about my desire to be a mother, not once did they discourage the idea; they were excited and supportive of me starting my own family one day.
I have a physical disability, a neurological condition called Charcot-Marie-Tooth. It affects the way I walk. I fall over regularly and have muscle and sensation loss throughout my body. Lack of circulation creates freezing cold legs on hot summer days, and I am consistently fatigued and in pain.
When I first seriously considered having children, I spoke to my neurologist. I had the hugest smile on my face: at the time I was in love and elated just thinking about the possibility of children. I’ll never forget his stern and unforgiving look in response; he couldn’t hide his disapproval. Silently he wrote notes on his computer as I waited. After what felt like hours, he lifted his head, adjusted his glasses and began to flood me with questions. ‘Have you considered your options? As someone with Charcot-Marie- Tooth, you have a 50 per cent chance of passing on your condition. Have you looked into genetic counselling? We could do a panel blood test again? Do you think you will be able to manage?’
I felt like I was crumbling. Shame overcame me. We’re taught to trust medical professionals, so his words really stung. I’m used to discrimination: I’ve had people stop in the street and pray for me. I’ve been stared at and ridiculed. But this was far more insidious: this was someone in a position of authority, someone who I was supposed to trust, suggesting it would be best if I didn’t have a child in case they were like me. It affected me deeply. I can still feel the pain in my chest from that day; it flares again in moments of self-doubt.
In June 2014, we found out I was pregnant. A rush of adrenaline filled my body and I had a rollercoaster of emotions: fear, uncertainty and excitement. The neurologist’s questions haunted me: how was I going to do this? I grappled with other questions too. Would the pregnancy be too hard on my body? Would people judge me? Could I manage? What if I fell over while holding my baby? At times my head was a whirlwind of anxiety.
I spent hours searching bookshops for a volume about parenting with disability. I wanted to feel represented, read a story like mine, know it was possible. I needed reassurance, to find a friend on the page saying, ‘Yes, you can do this.’ But there was nothing out there. In all the stacks of parenting books, there were no mums like me. I felt incredibly alone.
Where were the disabled parents? Why couldn’t I think of a movie or TV show that included a disabled parent?
More than 15 per cent of Australian households have a parent with disability, yet we are nowhere.
I knew representation mattered – so it became my mission to share the stories of disabled parents, to help other disabled people know they’re not alone, and to show it’s possible. I searched for other disabled people worldwide who were parents, and little by little I felt less isolated. It became an obsession, and I created a pool of people who I could reach out to. It began to feel like a community of sorts, a way for us all to feel connected. The common thread was that we all felt under-represented and alone in our decision to parent.
This led me to create the audio series We’ve Got This with the ABC. For the series, I travelled around Australia sharing the perspectives of disabled parents. Time and time again, I witnessed that families with disabled parents are just like any other family. Of course they grapple with physical and attitudinal barriers in society, but in their homes all the families I met were thriving.
The parents who share their stories in We’ve Got This are ingenious, creative and adaptive; they constantly have to navigate physical, attitudinal and social barriers within society. They have faced discrimination and they have had their choice and ability to parent questioned. This is especially the case for parents with intellectual disability. What these parents show us, though, is that parenting isn’t black and white. There shouldn’t be a template we all follow to the letter. Parenting as disabled people demands we let go of the ‘standard’ or ‘right’ way to do something; instead, it’s about being creative and flexible – and children are so beautifully open to being adaptive. These stories show us all how rigid the conventional ‘template’ of parenting is, and these parents display an inner strength that any parent would envy and could learn from.
How do parents who are blind push a pram or measure the right mix of formula and hot water?
How do parents who are Deaf know their baby is crying in the night? How does a mother who’s a wheelchair user get her baby in and out of the cot, or out of the car? Ultimately, it’s always about thinking outside the box.
Throughout my parenting journey, I’ve learnt ways to be adaptive and innovative. I’m now a mother of two; I have a six-year-old girl, Isobel, and a one-year-old boy, Archie. At the moment I’m in a world of sleepless nights, breastfeeding, pushing prams and teaching my daughter to sound out words while she learns to read.
Being pregnant the second time was no easier than the first. When you’re disabled, you’re constantly told by medical professionals and society at large that you ought be fixed or ‘cured’. This fed into a belief that my body was weak, breakable and incompetent. For the whole pregnancy I was riddled with fear that I would lose them, that my body was not stable enough to house a baby. Because of my disability, I also regularly fall over, so this added extra stress. During both pregnancies I visited the maternity ward regularly so I could have the baby’s heart rate checked: sometimes after a fall, other times just because I was anxious.
Archie is now a bubbly toddler. He is very different to my daughter. He is a firecracker, full of energy and charisma. At eighteen months, he has only just begun to walk, yet already I have found it challenging to take him outside the house. When I take him to the park, I go with friends or my partner, who I can rely on to chase him if needed, or I contain him in a little trike that I push and he can’t get out of, which my in-laws gave us as a present. Luckily he loves being in it, and it’s a wonderful way for me to stabilise as I walk, similar to pushing a walking frame.
At a regular check-up when I was pregnant with Archie, as soon as I waddled in with my large pregnant belly, the obstetrician said,‘I’m hoping you’re not going to do this again to yourself: no more for you.’In what world is this appropriate? I should have said something, but I was shocked, so I bit my lip and shrugged it off. What I wanted to say is: how dare you make assumptions, because I’m disabled, about what I choose to do with my body. Instead, the same feeling I’d had when my neurologist questioned me sank in again. The shame washed over me and the immense pain kicked in, causing my heart to feel heavy.
It happened again when I was having an ultrasound. The sonographer asked if I could pass on my disability. I said, ‘Yes, there’s a 50 per cent chance.’ Her mouth dropped open like a fish, before she said, ‘Okay, let’s see if we can see anything wrong.’ I gulped. In that moment, I thought, ‘There’s nothing wrong with me’ – but I couldn’t say it aloud.
I have to be honest: having a 50 per cent chance of passing on my genetic condition is not something that’s been easy to grapple with. I am proudly disabled, yet I have still worried for my children. I know what kind of world they are coming into; if they have my disability, they will face discrimination, barriers and physical pain, among other societal challenges. This knowledge is hard
to navigate.
People may judge me for choosing to parent while knowing this, but who better to make this decision than someone who’s lived with my disability for decades? I am proud of who I am and wouldn’t change a thing about me; I want to instil the same pride in my children. I want them to know that whoever they are, it’s okay.
The thing is, it’s not my disability that disables me: it’s society. Being a parent affirmed this for me. As soon as I had kids in tow, I noticed the stares get longer. People began to ask more intrusive questions: What happened to you? What’s wrong with you?
Having children was the catalyst for me embracing disability pride. When I first became pregnant, I was still grappling with internalised ableism. I am not even sure I used the word ‘disabled’ to refer to myself before that. Having children has enabled me to embrace my authentic self. If I’m not proud of who I am, then what is that modelling for my children? I knew if I wanted my children to be proud of who they are, I had to be proud of who I am.
Now Isobel knows my limitations. She’s a beautiful child who knows all about disability. She will move toys on the floor in the house out of the way so that I have path to walk along without falling over. I love the feeling of her hand in mine as we cross the road; she will often hold it extra tightly in case I fall. Sometimes she will help pull me across the road so we make it while the lights are red. The first time she noticed I had a disability, she said, ‘Mum, why do you always walk like a penguin?’ How innocent and sweet. We laughed and laughed together about it.
This is an edited extract from We’ve Got This by By Eliza Hull, published by Black Inc Books. Eliza is a contemporary musician, disability advocate and writer based in regional Victoria. She has been published in Growing Up Disabled in Australia and 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. In We’ve Got This, twenty-five parents who identify as Deaf, disabled or chronically ill discuss the highs and lows of their parenting journeys and reveal that the greatest obstacles lie in other people’s attitudes. Grab your copy from any good book shop.
