EL Letter: Eliza Hull on no longer hiding her disability

 Photo: Michelle Grace Hunder

Photo: Michelle Grace Hunder

 

Dear You Reading This, 

My name is Eliza Hull and I'm a musician. I write songs, sing and play piano. It has been my passion since I was a teenager and something that feels innate to me. I started singing at just five years of age.  I've always had a belief that everything happens for a reason; and at the age of five when I started to sing, I also developed a disorder known as Charcot Marie Tooth. Perfect timing perhaps. 

So what is Charcot Marie tooth disorder? It is a nerve disorder that stops messages from the nerves reaching my brain. How does it affect me? I walk with a limp, I need a rail to get up stairs, I can’t always open lids from jars (it seems to happen more when I'm hungry!). Some of the symptoms can be painful and annoying like last night when I was on a date night in Melbourne and couldn’t walk fast enough to catch the last tram. But actually what having Charcot Marie tooth has done for me is more than I'll be able to fit into this letter.

We all have decisions we must make about our lives and how we choose to live them. The way we perceive our lives, and what we create for ourselves, is reliant on our ability to see the good in what we have been given. Over the past year, I have arrived at the most beautiful place. A place of self love. I am thankful for having a disability. I am proud of having a disability. I am now comfortable talking about it and not hiding it. For me, it is about owning who I am. I believe that there needs to be a shift in the way we as a community view people with disabilities. For instance, today when I met someone and they saw me walking they apologised to me and said “oh you poor thing”. Whilst I understand that their intention was kindness, it says to me that they consider my life something that ought to be apologised for, which it is not.

The music industry is starting to change. It has been three years since I released any new music and I can feel a difference. Now, there is more talk about diversity; about showcasing all of us: disabled, transgender, all cultures, sexualities, about sharing our stories, varied as they are. People are listening. I remember when I used to meet with prospective agents or managers; I would sit at a cafe table and wait for them to arrive so that I didn't have to walk in front of them. I was afraid. I feared that if they saw me walk I would not get the opportunities I wanted. I was also worried it may go the other way, and I would only be offered the opportunity because of my disability being viewed as a potential marketing tool. I just wanted my music to speak for itself.

 

But there has been a shift recently. I have come to realise that my identity as a musician is as much about my disability as my curly hair, my love of strawberries and the colour purple. By denying any of it, I would be doing a disservice to myself and to others.

What would I love for the future? More of Dylan Alcott’s 'Ability' festivals and others like it, more accessible stages (I've literally been pushed up onstage by my band mates because there are no stairs) and more diverse line-ups at festivals with disabled musicians. But most of all, I would love if people had more conversations about disability, and it's starting to happen. I want us to be visible. I want disabled young people in high school to see disabled musicians up on stage shining brightly, and think 'I can'. 

Much love,

Eliza x

Eliza Hull's new song 'Hard Way' is out now, listen on Spotify and Apple Music. Like her on Facebook and follow her on Instagram. Read her EL profile here!