Something I get asked a lot when I speak about my disability is whether I’m proud to have it, and if you’ve read more than one of these blogs then you may already know that that is a bit of a complicated question for me. My immediate reaction is to say ‘no’ because I’m not so much proud of the disability itself – given that the Spina Bifida in isolation contributes to 80% of the stresses in my life – though I am probably proud of how I deal with it. But even then, I don’t really know that that’s anything to be actively proud of because I can’t be or live any other way. Maybe you judge that as me thinking too far into it, but I just don’t see these well-intentioned attempts by able-bodied people to understand what it’s like to have a disability as leading to one-sentence responses.

And one aspect of my opinion of my disability which will definitely throw people – especially given how I present myself on social media – is the way I feel about how my shoes look. If you watch my videos then you may assume that I don’t really care about people seeing my shoes, but the reality is that by doing these videos and showing my callipers at the end of them, that’s me making an active effort to like how they, and my legs in them, look. Acceptance of their image when I’m wearing my shoes definitely doesn’t come naturally to me.

I think what’s at the heart of that is that I’ve never considered myself as disabled by my body – unless I’m in a hospital gown, putting a bandage on, or in a wheelchair, and even in those moments the extent of my disability has always caught me off guard which is what makes the experience so traumatic. That probably sounds quite strange, though. That I have times when I pull my car into a disabled space, put the handbrake up, and sit there thinking ‘lol it’s kinda weird that I’m actually disabled’ as I put my blue badge on my dashboard.

Maybe it’s because I don’t have any pain and because my disability doesn’t affect my mind or my appearance unless I look down, that I’ve always been so good at ignoring it – a lot of times to my own detriment but hey, we do what we can. So it’s only when I’m confronted by my reflection in a shop window or in videos and photographs that I actually see my disabled body. And I’ll be honest, I don’t like it. What I see is all the minute details of my Spina Bifida: my left foot curving inwards because the operations never quite worked, a slight limp as I move, and the unusual (kinda jarring) shape of my metal callipers against my legs. So, for a very long time, I just didn’t look because I didn’t want to know – still now, even after all these Instagram and TikTok videos, you’ll probably see me bow my head if I have to walk toward a full-length mirror or a shop window and I still ask my mum to take the photograph from the waist up.

I’m getting better though! I don’t actually flinch if I see myself walking in videos or a reflection anymore – I’d still probably rather not see it, but it doesn’t sting my self-esteem quite so much now.

My parents can get very frustrated with me when I’ve brought this kind of thing up because it hurts them that there’s a part of myself that I’m still struggling to accept; I remember my mum saying to me once (through love and irritation) that there’s nothing wrong with my callipers making me look disabled because I am, and will always be disabled, so that’s just what I look like. And she’s right. But society says that that’s bad, that’s ugly, that’s pitiful, so no matter how right my mum is, it’s an active effort to agree with her every day of the week – especially when you’re sitting on the tube waiting for the person across from you to look up and see that there’s a human attached to the shoes they’ve been staring at for 4 minutes.

So yes I know that there’s absolutely nothing wrong with the look of my callipers – with some outfits I’ve even realised that they look quite cool, those comments from people weren’t based on pity in the end – and I would never ever ever (!) say that there’s anything wrong with looking like you are disabled, but we say things to ourselves that we wouldn’t dare say to others, so even that isn’t quite so black and white if it’s applied to your view of yourself.

Nonetheless, I’m doing my best to accept that part of myself without conditions, and my best is all I can ever give.