I was seventeen the first time somebody complimented my shoes. I remember, I was walking up the stairs in the secondary school I’d been attending for seven years already, when a new member of staff who I didn’t recognise came in the opposite direction, took one look at my callipers, and said ‘I like your shoes’. I stopped dead on those stairs feeling a mixture of shock, outrage, and confusion because I thought that he was taking the piss and I wasn’t exactly sure how to react to a teacher being blatantly cruel to me, but then I looked at his face I realised that this compliment was genuine; it didn’t come from a place of pity and it wasn’t him trying to wind me up. So I gave him a stunned look, said ‘thank you’, and went to tell my friends about what had just happened.

It’s strange because I know that my reaction to this type of situation implies that I’m insecure about my shoes, but I think to draw that conclusion is too easy. The fact is, that I know I’m physically disabled, I know I have to wear these callipers to correct the positioning of my feet, but wearing these shoes wasn’t a choice I ever got to make; I don’t particularly like the way they look, they mess with the silhouette of my outfits, they draw people’s attention to a part of my body I’d rather not be stared at, and the sight of them can make me be treated very differently. Yet, regardless of how I feel about them, there is absolutely nothing I can do to change whether I wear them. So, it’s not that I’m insecure about my callipers and my disability, it’s that I don’t necessarily enjoy the judgements people make of me when they see them – and I can’t really fathom them looking stylish…

Now I know what many of you might be thinking: if someone judges you because of two metal bars on each of your legs then that’s just their ignorance, it shouldn’t be something which you allow to bother you. Fair point, well made. But what I’ve noticed when speaking to people about this kind of thing, and then going out and existing in the world, is that individuals have absolutely no idea of the difference in how the able-bodied world treats me when they can see my callipers, versus when they can’t.

Let’s take going to the airport for example, since I was at JFK last week. I always wear trousers which cover my shoes when I go to the airport because it’s a place where you’re guaranteed to see a lot of people, you might be tired (maybe a bit stressed), and for me, I always know I’m going to get searched because my shoes will set the metal detector off, so I don’t want my callipers to draw any more attention to me than I’m already going to get. However, this then causes me problems when I ask for disability assistance because without those metal bars, nobody can understand how I could possibly be physically disabled enough to not be able to stand in a queue for 25 minutes; people take one look at me and they assume I’m trying to unjustly weasel my way into a shortcut. So, what do I do? I wear an outfit which shows my callipers just to avoid that hassle, even though I know it’ll mean seeing loads of people staring at them when I’m in precisely the wrong mood? Why should I have to do that?

This feels like a perfect point in the discussion to use the term many of us have seen knocking about on signs next to disabled toilets since the pandemic, and preach that ‘not all disabilities are visible’. But what I find hilarious, is that my disability IS visible! It doesn’t matter what I’m wearing, you can still see the glint of the metal bars at the base of my shoes – god knows people still give any centimetre of calliper a good stare – so I’m not sure that it’s even about how much of my shoes the world can see. I think there’s a problem that people either expect to see disability as consuming the appearance of a person, or not there at all, but if you’re the former then you’re too disabled to be anything other than that, and if you’re the latter, then you’re exaggerating and you’re not disabled enough.

I sit somewhere in between both of those ideas, and it means that a lot of the time, I’ve got no idea what I am so I just do what makes the most sense to me in a given situation. I wear outfits which show my callipers whenever I want and I switch off to the staring, but in the moments when I’d rather everything else about me take precedence over the disability, then I’ll cover them up, even if that comes with expecting to get some shit off of someone at some point – it doesn’t always happen, but it’s highly likely if I’ve covered them and then have to ask someone of authority for a bit of disability assistance. Also, you probably won’t see me going on a date, or meeting new people in an outfit which shows my shoes.

But before I leave you, I want to emphasise that these acts of hiding my callipers aren’t because I’m ashamed of them – I might not actively like how they look, but shame has nothing to do with it – it’s because having a visible physical disability encourages people to focus on it for longer than you might like them to. So even though I have nothing to hide, I hide it to take control of the situation and encourage you to look at and listen to me like you would anyone else, and then you can notice the Spina Bifida later. It’s a double-edged sword though because if I now need to ask for help, if you can’t see my shoes, then you might not believe me…

Tricky, isn’t it?