Eliza Hull was told her disability ruled out parenting. She didn't listen
By Louise Kinross
Eliza Hull is a successful Australian singer. She now has two children, but when she first thought about getting pregnant a doctor told her she shouldn't. Eliza has Charcot Marie Tooth, a neurological disorder that causes nerve damage and weakness and difficulty walking. "I went to my neurologist to say I wanted to have children and he told me I shouldn't. He told me I couldn't, that it would be too hard. If I had listened to him, I wouldn't have the two incredible children I have. I wouldn't have my family."
Earlier this month Eliza's book We've Got This: Stories of Disabled Parenting was launched in Australia. It includes 25 stories from disabled moms and dads. There's a North American version coming in December.
"When I was looking at becoming a parent I searched for a book like this, just to feel represented and know what it would be like to be a parent with a disability," Eliza says. "It didn't exist. This book is for any person with a disability who's wondering what being a parent is going to be like, or who may have been questioned about their choice to be a parent. It's also for any parent with a child with a disability who wants to get a sense of the future for their child."
Eliza says a common thread in her book is the discrimination disabled parents face in the community and medical system. "When we step out, people are staring or asking questions or questioning our ability to raise our children," she says. "There's a lot of discrimination in the hospital system."
Eliza recounts a story of deaf parents in her book who weren't provided with an interpreter during their child's birth and hospital stay. Their newborn was given a hearing test and they couldn't understand what the nurse was saying about it. They were trying to read lips, but there was no accessibility. Then on top of that, the nurse congratulated them and was overjoyed and excited when she told them their child can hear. She says 'The baby's not like you.' That was very hurtful to these parents. They didn't care whether their child was hearing or deaf. They are proud of their deaf culture and community."
Eliza notes that life with a disability involves problem-solving and creativity, attributes that lend themselves well to parenting. "For instance, I have Charcot Marie Tooth and when I arrive at a building, because I can't get up stairs, I have to think 'Okay, how am I going to get into this building?' In the home, you will see a thriving family that has adapted and been creative in the way they parent. Their children thrive because diversity is in the home and is accepted and celebrated. They go out and become kind and open to diversity."
Eliza shares another story from her book of blind parents who went to a hospital for their child's birth and "a social worker was called immediately because their ability to parent was straight away questioned." She notes that 60 per cent of children born to parents with intellectual disabilities are removed "often without any education or support. These parents just need more education and support to be the parent that they know they can be. Yes, sometimes it's not safe for a child to stay with their parents, but that can happen whether they have a disability or not. Ultimately children and parents belong together, and that's what my book shows."
In Australia, 15 per cent of children have at least one parent with a disability, Eliza says. "Yet we only have one accessible clinic serving disabled women who are pregnant. We need to provide inclusive spaces where women feel accepted. We need to ask questions like 'What are your access needs?' 'How can we support you to be the parent you want to be?' We need to listen. The person with the disability knows their body more than anybody. It's trusting that person and their choices."
Eliza says contributors to her book reflect "a cross-section of disabilities and also people from different intersections. There are parents from culturally and linguistically diverse backgrounds and same-sex relationships. We have parents who identify as having a chronic illness and as deaf, blind and neurodiverse. We have parents with intellectual disability."
Disabled parents have greater access to technology that can help in parenting, but also come up with their own practical hacks. "There's a bottle machine that makes up formula for you if you're blind," Eliza says. "There's a pram tow, a device that attaches to a pram, so blind parents can pull it behind them and have the guide dog in front of them. Deaf parents use vibrating packs around their bodies so they can be alerted to their baby crying. Parents with dwarfism cut the legs on a change table to make it accessible. Parents with autism use noise cancelling headphones, fidgets and a sensory swing to help regulate themselves while parenting. I have low muscle tone in my legs and hands and I wanted to know if there was something to help me bathe my child safely." Another parent suggested this adapted bathing seat, which Eliza says works well.
Eliza says that disabled parents in Australia are not able to access government-funded nurturing assistance to help them direct care of their child, as they are in Ontario. "We have support workers that support us, but not our children."
Eliza says she's been inundated with readers thanking her for writing the book. "I hope that disabled people who may have wondered whether they could be a parent, and maybe were told they shouldn't be a parent, I hope it enables them to realize if they want, they can. There are ways to be adaptable and technology out there and a community that can support you."
Eliza recommends an international Facebook group called Disabled Parenting Project where parents share tips and support. Like this story? Sign up for our monthly BLOOM e-letter. You'll get family stories and expert advice on raising children with disabilities; interviews with activists, clinicians and researchers; and disability news: https://bit.ly/3IIK5Qo.
