Thanks to an Arts Access Australia Cultivate grant, in 2012 Eliza Hull found herself a student at the world-renowned Berklee College of Music. The teacher for her first class? Well, curiously I can’t tell you, Berklee college has a policy of not revealing the names of its guest lecturers but Hull assures me that ‘famous’ hardly covers it. We are talking five Grammy awards. We are talking more than 100 million in record sales over a lifetime. In any case, that class was a life-changing moment, and not just for the musical insights she learned, but for the understanding she gained into her relationship with her own disability. Eliza lives with a condition that affects her peripheral nervous system called Charcot Marie Tooth.
Writing about that class in Ramp Up a year later, Hull tells the story:
“He (the teacher) invited us to individually walk onto the stage and stomp our feet in four-four rhythm. My hands immediately became sweaty. To be honest, I wasn’t even sure if I could stomp, let alone in four-four rhythm… the teacher shouted, “What is this thing you’ve got going on?” I kept trying to stomp my feet and he asked me to give something more to my audience, so I held out my hands and looked each person in the eye. To say I was nervous was an understatement. I was petrified but answered him honestly: “My name is Eliza Hull. I have a leg disability. I am a singer and sometimes it is hard for me to get on stage.”
It was of course very emotional for me to declare this in front of fifty strangers in a foreign country. My throat tightened and tears rushed down my face. The teacher looked at me and yelled out to the room, “I f***ing love you, Eliza Hull!” and the audience broke into a cheer.”
In a phone call, Hull explains her reaction, “he, in front of everybody said in front of everybody that he loved my disability and so I was kind of – well if he loved it, then I should love it too.”
Hull feels a similar debt to Stella Young. “She changed me actually, she was very influential. Stella was proud of her disability and that was something I had to work on for myself. I think about her a lot in my work.”
Work, for Eliza, continues to be her music but also, now, she is producing a podcast for the ABC: We’ve Got This: Parenting with a Disability. She brings to the recordings some of the same sensibilities Ramp Up promulgated – an aversion either to over sympathising or groundless hero worship (“Inspiration Porn”, as Young pithily labelled it). She attributes her experience as a person living with disability to the perspective she brings to the series.
“I know what it feels like,” she says. “I know what it feels like to be discriminated against, to have my ability questioned, all these things have enabled me to make the decisions to just try and make it as accurate as possible and not be discriminatory.”
In introducing the first episode of We’ve Got This, Hull explains that as a mother she searched for stories about being a parent with a disability …”but there was nothing out there. In all the stacks of parenting books, there were no mums like me. And this is what I’ve set out to change…”
So far the series, which launched on October 22, has heard from Jen, a profoundly deaf mother (through an interpreter) – who explained her struggles to have an AUSLAN (sign language) interpreter when going to hospital to have her baby; and Emma and Vaughan, blind parents talking about the challenges presented by toddlers. A mother with cerebral palsy who is in a same sex marriage (“it’s not considered an option to be a parent and disabled”), a quadriplegic mother.
Hull finds the common thread with all of the families she has interviewed are the misconceptions about what they (she uses ‘we’ in our chat) can and can’t do. “A lot of parents feel like that constantly their ability to parent is questioned, their ability to being in relationships, their ability to desire and love and care for another is questioned, so this stigma is attached to what it is meant to be disabled,” she says.
Hull’s CV as a journalist is not long, the podcast series was made possible through a scholarship and the counterfactual of knowing if her disability has made Hull better at this work than someone else cannot be made. But, listening to her interview Amanda, an intellectually disabled mother of twins who, with help, has raised her children to adolescence, and Susan, who was not able to keep her child, it is difficult not to be impressed by her respect for her interviewees, their voice – and the power of the facts and those who’ve lived these stories to tell their own reality.
“If you just tell a story in an accurate way, it’s newsworthy, it doesn’t need to be over-sensationalized or exaggerated to be a good listen,” Hull says.
This is the last article in the series Remembering Ramp Up. Thanks for your company.