Why I now tick the disability box
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As human beings, we often interpret the world in ways that help us simplify it, which tends to mean we see things in a way that is binary: good or bad, black or white.
This is what I did when it came to understanding disability, but I am now starting to see more shades of grey.
I’ve always been self-conscious of my missing fingers and toes, whether it’s instinctively balling my hands into fists when a picture is taken, avoiding sandals in the summer, or dreading any form of climbing after a spectacular fail on the monkey bars as a kid.
It’s something I was born with (something called Amniotic Band Syndrome, likely caused by gestational diabetes) but it’s not something I think about every day, or even every week. I’ve learned how to do things in a way that works for me, and often have to remind myself that I have a physical disability.
When I do notice it, it’ll be sparked by the split second of shock or curiosity in someone’s eyes when they notice for the first time, when one of my knobbly bits gets caught on something when I’m gardening or doing DIY, or if I need to grab hooks or wraps to strengthen my grip at the gym.
One in six Australians are recorded as having disability, and until last year I was counted as one of the remaining five.
Despite the fact my missing digits do get in my way, I ignored the disability label and pushed it aside. It didn’t capture how I felt—and if it had, I would have felt uncomfortable with my experience distracting from far more significant challenges faced by others, or more courageous disability advocates.
For the most part, society sees disability when it gets in the way, and so did I. I didn’t see my disability as severe, so I pushed it aside. I think if I asked the people closest to me it’d be the same: few, if any, would consider me as someone with disability.
For me, this view started to change when I injured my hand lifting weights at the gym. Though I set a personal record, I have been out of action for almost four months at this stage. The injury was due to overloading my grip, which is weaker because of my missing fingers. In ignoring my disability, I caused damage that could have been avoided. It gave me pause for thought.
My views were really shaken when I was decided to seek treatment. As might be expected of a guy in his 30s, I put off seeing anyone about it initially—partially because of a full schedule, partially because I was a bit nervous. However, after three weeks of no improvement, I booked a physio appointment and sat slightly nervously in the waiting room.
As I was ushered into the treatment room and I put my hands on the table, I realised this might have been the first time I had an adult fully focussed on my hands. I’ve had curious kids take my hands before (a niece once got very frustrated with me when, opening and closing her own hand, that I didn’t follow suit to reveal my own fingers), but I’d never had this experience with an adult I’d just met.
As the physio began to examine my joints, massage my hand and ask questions about the injury, I was struck by the wave of relief I felt. I realised that I’d been holding back a wave of nerves and self-consciousness without really knowing it.
As we progressed through the consult, she explained the ligaments that may be damaged and was genuinely animated as she explored how my missing digits might be impacting the mechanics of my hand.
Afterwards, sitting in my car ready to head back home, I felt quite emotional about the whole experience. I’d never before revealed my hands so quickly to someone, and never had anyone so excited, comfortable or knowledgeable about them.
I began to understand that my disability does affect me, just in ways that I’ve learned to ignore and hide. A big reason I can live my life like this, without major barriers, stigma or discrimination, is thanks to the visibility and activism of others.
Many live with disability silently. They persevere. They work hard to be inconspicuous and avoid being a burden. However, when you have something that isn’t quite ‘normal’ (what is that anyway?!), by being visible you give people a reason to build an expectation of difference.
We need to help people remember to consider the grey, even when it comes to looking at ourselves.
Like people now avoid assuming someone’s sexuality when they speak about a partner, we can also change the way people assume people’s physical and mental attributes.
It’s about normalising difference.
Inspiring workplaces to treat people with curiosity and ask questions of them rather than relying on proactive disclosure. Dispelling stigma around disability and a perception that it equates to disadvantage.
Where we work to address a lack of understanding and education by sharing our stories, and acknowledging those who shared stories before us.
It’s about creating a society where kids don’t feel they have to ball their hands up in a photo to avoid the attention it brings.
