There was a time in my life when I’d run all over town in five-inch heels, dance till 5am, then be on my feet next day for a full shift on the shop floor. No problem, no physical restrictions.
I was 20, in my final year of university and living a very able, mobile, and 'normal' life. The days were punctuated with pain from multiple undiagnosed conditions, but alcohol was an effective pain reliever – for a while at least.
My best friend and I were out dancing most nights of the week, laughing till we cried, and making memories for life. Memories I really cherish now, because ever since my mobility has steadily declined, leaving me a prisoner in my body and home.
Now, at just 36, I need a walking stick, which I’ve only recently allowed myself to have.
Chronic hip pain, endometriosis, and hypermobile Ehlers-Danlos Syndrome - a painful connective tissue disorder - has put paid to my mobility, severely impacting my ability to walk, cook, sit, shower and stand, often confining me for weeks to the sofa or bed.
Like Punteha, Eliza Hull is also a disabled parent. She has a neurological condition known as Charcot-Marie-Tooth. Post continues after video.
It didn’t happen overnight. My slow slide into disability happened so gradually, I didn’t even realise I was disabled until early 2020. Having to quantify how difficult or impossible simple daily tasks had become for me during an arduous disability benefit assessment was soul-crushing, dehumanising and when it really dawned on me.
Even though I’d had a disability parking permit to help me for three years, I’d hoped the limited mobility would improve enough to award me some semblance of the life I’d once lived before.
Instead, recognising I was disabled seriously knocked my feelings of self-worth and made me question who I really was.
How was it possible the same girl who ran to catch the train in vertiginous heels had now become a woman, mother, and wife so disabled and immobile, I couldn’t put my pyjamas on alone or pick up after my daughter?
I found it extremely hard to accept I was now disabled and questioned why this new label was so difficult to come to terms with.
I began having therapy and wrote personal essays for the press in my capacity as a journalist that forced me to unpack it all. I slowly realised it was societal ableism that was undermining my self-worth - not my illnesses or level of disability.
I am still all the things I was before my illnesses took my freedom and independence. I am creative, loyal, and imperfectly human.
My disability hasn’t stopped my husband loving me. If anything, his protective, kind and loving arms wrap around me tighter than ever. Despite my fears he will leave me, he reassures me he never will.
My disability hasn’t stopped my daughter feeling loved and nurtured, who plays beside me as I lay in bed during flatness. When I ask her if she minds I cannot sit up to play, she simply says, "I like being where you are, Mummy."
My disability has not stopped me making mistakes, loving fiercely or striving to further my career.
It has, however, made my world smaller, socialising difficult, work more painful and difficult to maintain and my anxiety higher. But these are things mostly impacted by life’s inaccessibility, the modern thief of joy that is comparison on social media and the hit to my self-employed income when I cannot work.
Recent statistics revealed a disabled person in Australia is more likely to have a lower income and twice as likely to be in financial stress than an able-bodied counterpart. They’ll also have less savings and one in 12 will be forced to move home because of their condition or age.
I can understand the financial duress. My pain forces me to down tools for weeks, severely impacting my earning power as a freelancer. Having to leave my staff job for a lack of flexibility to work from home gutted my pension and took away paid annual leave and sick days.
My disability also dictates whether I’m able to accept lucrative contracts as it limits how many hours I can work. Additionally, it costs me thousands a year in private healthcare, physiotherapy, chiropractic care, talking therapy, and medication.
It brings me daily guilt for not being the active mum I dreamt of being. Becoming disabled has cost me so much so it’s no wonder it took years for me to accept I was not just in chronic pain, but disabled. Not just suffering transiently, but permanently changed and unable.
For years, I pushed through the pain and physical difficulty, working full time in an office, necking painkillers to keep up with able-bodied colleagues who could work all day and party all night without fall-out.
But in trying to keep up, I further damaged my body and exacerbated my conditions. I wasn’t physically capable of keeping up in my mid-20s, but I pushed through incredible pain for society’s ideals of what a young journalist’s life is supposed to look like.
Through white hot pain and a limp in my leg, I commuted for four hours a day only to later be denied flexibility or working from home unless I accepted a demotion.
I had to quit the job I adored to protect my physical well-being and reclaim my life. I wasn’t ready to leave but the company’s ableist work model made me feel less than. A second-class citizen. I felt like I was being punished for something out of my control.
I gave up on travelling abroad because it was hard. What I should have done was used the wheelchair service in airports and stopped being embarrassed about the confines of my body, or worried about pitying or disbelieving looks from the public.
Some disabled readers and wheelchair users will think I’m part of the problem for feeling this unfair sense of shame about my status. But I can’t help the ableist judgement and restrictions that exist like a mist around us, or how it makes me feel.
All around, the societal message about disability has been abrasive, loud and clear. It’s told me repeatedly, if you are able-bodied, promotions are within reach, travelling is easy, insurance policies cheaper and a possibility in the first place.
Every time I place my disabled parking permit on my dash and get out of my car, I worry I’m about to be confronted by an ignorant stranger who’ll call me a liar because I can walk a few feet though they’ll have no earthly understanding of the physical limitations that qualified me for the permit.
There are so many things engrained in our society that equates ‘normal’ to ‘able-bodied’ and these continue to make me feel like a failure. Work output, productivity and earnings included.
It’s only since writing about my disability publicly that I’ve entered a community of amazing, disabled creatives and realised actually, I am not the one that’s lacking here – it’s society and its able-bodied mobility-tinted glasses.
Listen to This Glorious Mess where Eliza Hull shares what it's like to be a disabled parent. Post continues below.
Given that one in six adults in Australia is disabled, ableism and the linked, diminished perception of the value of our disabled lives, I bet I’m not alone in feeling this way.
I can only hope that as the pandemic continues to forcibly and permanently dismantle archaic, ableist work models like the 40-hour, city-centric, office-based jobs, and champion, facilitate and allow access to remote and part-time working... people like me will begin to feel the full power of our innate worth.
Feature Image: vtfeatures.co.uk.
Top Comments