I had six operations as a child but I only really remember the last few, and even then the images are hazy. I remember the fever I had when my foot got infected so you could see the bone from the outside, but what I remember more is when my oldest brother (a teenager at the time) was late to meet his friends because he climbed into my tiny bed with me to watch The Road to El Dorado, as I shivered from the fever and waited to go to the hospital for another operation. I remember crying every time my parents told me I’d have to go to school in a wheelchair, but then I also remember all the laughs once I got there and my friends would run through the halls pushing me as they went. And I remember that even though I felt myself shrivel every time I had to climb into that wheelchair seat, I didn’t mind it so much when we went down a sloped pavement because my Dad would always make me laugh by letting the handles go and running alongside me.

Whenever I’d have to go to the hospital for operations (which, was not as often as it is for some children), I’d get excited because I’d be skipping school. I remember those workbooks with the ridiculously easy exercises, and I remember finishing the whole thing in about twenty minutes and then spending the rest of my time drawing or watching cartoons. I also remember fighting the anaesthetic before the operations even when I knew I wouldn’t win. Naturally, I never liked being in the hospital gowns or waking up with stitches in my feet, but I don’t have any trauma from it either. In a weird way, it was kind of an adventure.

I’ve consistently thought against sharing the more vulnerable experiences of my disability because they play too neatly into the stereotype of the weak and passive disabled life; the image of me being in a hospital bed with a cannula in my hand rather than in a Year 2 art lesson strokes society’s ego too much. Nonetheless, I’m telling you a handful of these memories now because I want you to see that even in the moments when I fit into the DIY SOS trope, I didn’t feel like this image of the poor disabled little girl. I just felt like a little girl – one who was cracking jokes all the way through because I mostly didn’t care about my Spina Bifida. (Which defo contributed to a few blisters along the way, but oh well 😀 ).

The point is that I only ever truly feel disabled when society disables me – and it’s important that able-bodied people understand that because if they don’t, then it’s easy to think that disability has nothing to do with them.

In the last few months, I’ve felt really excited about my future because I’ve been working really hard to get myself started in the radio world. But in the midst of all that, I’ve had consistent problems with my feet where they blister, then they heal, then they blister, then they heal, then they blister. The reason that this has been happening isn’t because I’ve done something I shouldn’t have, instead, it’s because the factory which makes my shoes spontaneously decided to change the lining of my insoles last year. The new lining was tougher than the old one, it caused my skin to harden quicker than normal, creating a blister which then never really healed. You’d think that this would be easily remedied by asking for the insoles to just go back to what they had been for years, but I did that, and still every new pair I’ve received has been wrong in a different way – even though my insoles require about three modifications. So at this point, I’m convinced that whoever’s making them is completely ignoring the prescription.

I understand that the pandemic and Brexit, and a general under-funding of the NHS have made it so that resources are stretched and waiting times are enormous, but these things don’t change the fact that I need the insoles and shoes to walk. I am patient, and I don’t kick up a fuss until the very last minute because society tells me that I should be grateful for whatever I receive, but what I’ve been receiving for the last six months has been making my condition worse. What I’ve been receiving is forcing me to need more from the NHS; requiring them to spend more money on production and distribution than they would normally have to, just because somebody isn’t reading my prescription correctly. I have wasted materials in my house that I can’t use but I could’ve if someone had followed the design. Who knows! I might even have somebody else’s design and now they’re suffering too because we have each others’. But I bite my lip, strap my foot up, and I don’t start any arguments down the phone about this stuff because apparently, it’s nobody’s fault. The worst part isn’t the anger though, the worst part is being at the mercy of other people and them not seeming to take that seriously – like when I asked the receptionist if there’s any way my shoes could please be posted to me without being lost in the post. She laughed and nonchalantly said yes but if they’re lost then they’re lost. She laughed and I cried.

I think it’s easier for people to sympathise with, or pity, you when you’re a young girl in a hospital gown because most people identify a level of tragedy there. It doesn’t matter that I was a happy child, who didn’t feel disabled – operations or not – what matters, is that I looked vulnerable in that wheelchair. But half of the times I was in that chair were caused by the system’s incompetency to supply me with the basic materials I need. So yes, I smiled through the not-so-fun disability moments and I had a beautifully happy childhood, but there were times that I didn’t need to be in that chair.

So as uncomfortable as it might be for people to understand, it is a fact that this society disables me far more than my Spina Bifida ever could, and I don’t want pity for that, I just want my shoes.