I was 12 years old when I went blind in my right eye and started losing feeling in my hands. I was a mystery that had to be unravelled. Doctors had no idea what was happening to me, and because of this, I didn’t either.
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I was 12 years old when I went blind in my right eye and started losing feeling in my hands. I was a mystery that had to be unravelled. Doctors had no idea what was happening to me, and because of this, I didn’t either.
It was a health journey that revolved so heavily on the ‘why’, that nobody considered the ‘how we move forward’ part. I wanted to shun the part of myself that had to be poked and prodded, and run away to the hills. So I kind of did, at least mentally.
As I grew older and got progressively more ‘hot-potatoe’d’ through the system, we finally started getting breadcrumbs of answers. There was pressure in my head, which led to pressure in my eye, and some sort of hereditary or genetic metabolic issue going on. My growth had been stunted at the pivotal age of 12, and I remember having a very visceral feeling that everyone was growing up ‘better’ than I was.
Although the breadcrumbs didn’t lead to any root causes, my doctors and parents felt the answers were sufficient enough to stop digging deeper. On the surface, I’m sure they were just trying to settle me down into a normal teenagehood. But the words left unspoken set me down a complicated path filled with confusion over my identity.
Unseen Struggles
I grew to know my blind eye as a funny little quirk. It wasn’t something I hid, but it also wasn’t something I thought I was allowed to make a big deal over, either.
I remember struggling trying to see the board in school, but not realising I could speak up. And sometimes, when I was super tired, my good eye would get a little lazy. Even during exams, I put up with the able-bodied parameters and pushed past my limits.
My hands also gave me grief that I didn’t know what to do with. The funny little tingles eventually morphed into chronically numb whole fingers – and that made me feel so confused and jarred that I blocked it out of my sensory experience altogether.
I remember trying to get a job in hospitality during my early university years. I was never good enough for them – I couldn’t hold the plates and cups properly, I couldn’t move my fingers quick enough on the till. It hurt, because I was trying my absolute hardest. When I eventually did nab a hospitality gig, I was constantly yelled at for having ‘bad form’ and would come home in tears after every shift.
Internalising a sense of lack
Writing this now, I realise that my struggles were not only unseen by the outside world – they were also dismissed by me. And as a disability activist, that’s hard to swallow.
I think the biggest realisation has been the lens I’ve lived my life through. Because I had such a confusing medical experience at such a young age, with nobody there to emotionally guide me through the changes, I completely internalised a sense of not being good enough – ever.
It wasn’t the blindness in my eye that stopped me from seeing the board. It was because my body wasn’t working right. It wasn’t my hands that held me back from a career in hospitality – it was because I was not cut out for the gig.
There was never a time where I was supported or uplifted externally for doing my best in the body I was living in – it was always just me and the voices in my head.
The stories we’re told about disability
As a journalist, I now understand that the social ‘definition’ of disability was different when I was growing up. While the true meaning has never changed, we had been led to believe that there was a ‘cookie-cutter’, one-track path to having a disability.
We learned from movies and the news that disability involves wheelchairs and being an inspiration. I didn’t see stories about half-blind girls with weird numb hands, so I never saw myself as someone who was allowed to identify with having a disability.
Thankfully, as I grew up and graduated university to travel the world, society started whispering a little more about invisible disabilities. It piqued my interest, as my backpacking adventures had exacerbated the symptoms in my hands, eyes and various other bodily systems.
The realisation
I started realising that I might be living with an invisible disability. But the initial realisation brought me a lot of discomfort. Because I had always had to be strong and independent with my symptoms, acknowledging the fact that I had a disability felt weird.
So many different emotions came up. I felt like an imposter, because my symptoms didn’t seem as ‘severe’ as others’ did. I felt like an outsider, because I had dismissed my symptoms for so long and didn’t belong. I felt embarrassed – realising I held a lot of internal ableism and shame around my body and the way that it worked. It was almost like I used my avoidance as a defence mechanism.
I experienced thoughts like:
The turning point
Everything changed when the pandemic hit. We headed home from our travels, with me feeling sicker and more symptom-overloaded than ever before. It took me a good six months of wrestling with my ‘new identity’ before I started stepping into the realisation of empowerment.
I truly believe my world changed because of the conversations we all got to have during the pandemic. Finally, disabled people had a part to play in the conversation, and hearing opinions and experiences from every walk of life really helped me realise that I was a part of the disabled community.
After realising how big the gaping hole in my life had been, I sheepishly applied for support through the National Disability Insurance Scheme (NDIS). The whole process left me feeling strange. But with the support of my partner acting as a helpful outside perspective, I knew that I was still unconscious about the struggles I faced in my everyday life. It was just so normal for me, that I never considered it.
Being accepted into the NDIS felt like a milestone moment. And although, 4 years down the track, I am still learning how to thrive in my new identity as a disabled woman, I have never felt better. Finally, I am not at war with who I am internally.
And although I believed that the ‘label’ would disempower me, it’s actually given me the complete opposite experience. Understanding my little quirks and differently-wired abilities has given me the freedom to be who I want to be. And I wouldn’t switch that for the world.
Usually a little bit salty and sandy, Imogen Kars is a multi-dimensional creative and woman of the alphabet. She lives with multiple disabilities and chronic illnesses, and is a passionate mover and shaker who writes to make the world a better place.