Consistency is key

Consistency is key

No matter how much I post about my disability on the internet, I am not, and never have been, very good at asking for help with it. I can do my own TedTalk in a room full of strangers about how ‘it impacts my life’, or overshare on the internet, but internally, I still wince from embarrassment each time I have to ask someone to alter their actions to accommodate my disability.

As a little girl, I had six operations which caused me to spend prolonged periods of time in a wheelchair and at hospital appointments, but I still don’t remember ever feeling ‘different’ because of that – shout-out to some top-tier parenting from Mr and Mrs Douglas there. Obviously, there were times when I was confused and frightened by it all; I mean, I remember the fever when an operation on my left foot got infected so the bone could be seen from the outside, I remember bawling my eyes out every time my parents told me I had to go in my wheelchair, and I still physically cringe when I think about getting stitches taken out of my feet after operations. But in and amongst all of that, I climbed as many hills as my able-bodied brother whenever we went camping, and I have no memories of feeling lesser than my peers or my siblings because I was ‘disabled’. However, I’ve come to realise that this was largely due to the fact that until I was in my mid-to-late teens, my disability wasn’t my own; it was my parents’. This Spina Bifida that everyone told me about was something I knew I had, but the dealing with it was something my parents did; like any six-year-old, I just went wherever I was told with a smile on my face and a Cinderella dress on.

Stuff started to get a bit sticky when I was a young teenager though, because by this point my friends and I were old enough to go into town on our own. So, instead of having the luxury of being lifted onto my Dad’s or my oldest brothers’ backs when the walking distances started to get a bit too far, I had to rely on my 14-year-old friends being emotionally aware enough to know the limits of my disability, even though I’ve always been too embarrassed and too stubborn to bring it up. Inevitably, this didn’t go very well and there were a lot of angry tears at the kitchen table.

Then in my late teens, I did really try to quieten my ego in favour of being responsible with my feet. But that’s indescribably difficult to do when not a single person around you is having to do the same – not to mention the fact that I’ve also got a naturally adventurous, ‘go on then!’ attitude which makes me want to do things I probs shouldn’t. So I effectively had to go through a period where I mourned the fact that I was too old to ignore my disability now; I had to grow up a bit. But thankfully, the wallowing didn’t last very long since crying over not being able to run a marathon or go on a hike for four hours wasn’t going to change anything. Plus, I can do plenty of other stuff anyway.

Sometimes I do still feel the loss though, like when I’m walking through town with my friends and they’re walking faster than me, my legs are getting tired, and I’m getting out of breath trying to keep up. Or, when another person in a Council or Security uniform tells me I can’t park here, that there aren’t any disabled spaces, and that they don’t know where I can go. Or at the thought of going on a date with someone I’ve just met, them wanting to walk around, me not being able to, and having to talk about my disability before I get to say anything else about myself.

Basically, I find asking for help with my disability humiliating and exposing, and I’ve been disappointed by a lot of people before, so it’s likely that if you do offer to help me out, even though I’ll obviously really appreciate it, it’ll take me a minute before I trust that you’re not going to forget next time. I know that that can be annoying if you’re intentions are sincere, but I can’t help it.

If you do want to be supportive of someone with a disability, I think the best piece of advice I can give you is to be as subtle and consistent with your actions as you can. I might speak very publicly about disability, but even I don’t want it to be brought up in every conversation – in fact, the best-case scenario for me if I’m out and about, is you being the one to suggest sitting down or getting an uber because you’re tired. That way, my legs are looked after and I don’t feel guilty or embarrassed for making you do something you wouldn’t normally have to.

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