If there’s one thing that I always hate hearing from people as a young, disabled woman, it’s ‘oh you do so well’. I’ve heard it whilst sitting on buses, walking down streets, in the waiting areas of the doctors or in airports, from the mouths of my parents’ colleagues and those of my teachers, and plenty of times from strangers when they simply don’t know what else to say. And I know that the intention is often pure; people want to show some level of appreciation for the fact that my physical existence may not be as simple as their own. Only, most of the time it just comes across as a bit bloody patronising.

The flip side of this, however, is that I spend so much time coping with my disability whilst doing whatever I want to do, that I’ve been guilty of disassociating myself from the fact that I’m physically disabled and that these things I’m doing are impressive. I am also English, though – Northern at that – so I suffer from an acute inability to talk about my successes without the embarrassment setting in.

But when I really think about why I don’t acknowledge ‘how well I do’, it’s because ableist aspects of our western society make it such that I’m supposed to blend in. Therefore, if I make any reference to how it might be really bloody impressive that I’ve done things like travel to, and live in the middle of the Nepali jungle without any access to medical care for 3 weeks on my own when I was 19 even though 3 weeks before that I couldn’t even go into work because I had an infected foot, then doing that doesn’t make me blend in. It brings my disability to the forefront, and I stick out in precisely the way society has told me that I shouldn’t.

So this is the part where you, my lovely reader, (hopefully) think ‘yes, of course, that’s impressive! You shouldn’t want to hide who you are’. And just like I’ve said to every person who has had genuine kindness in their eyes when they’ve told me ‘you do so well’, I want to thank you for saying that.

But drawing attention to my physical weakness is hard.

Last summer whilst I was in Ukraine, I found myself in a situation where I knew I had to mention my disability in a very public way, in order to avoid awkward run-ins later on. As always, when arriving at a place full of strangers, I chose to wear an outfit which covered my shoes to avoid any judgements before people heard me speak, but then I remembered that summer camp counsellor is a pretty active job and when the kids arrive tomorrow, if people see me sitting down every now and then, then they might think that I’m lazy or slacking off. So, to save face, I sat next to my friend from the first year I’d worked there and I announced my disability to a group of around 35 people. I’d never done anything like that before, and it was awful; my voice shook with every word I said, and I was very close to tears. But people were lovely about it, as they often are, and my announcement actually created the space for individuals to feel comfortable and slightly obliged, to ask me specifically how my legs were doing during our intense working days – something no one except my parents had ever asked me.

However, every single time someone asks about my disability, or I have to explain how it limits me, it’s emotionally draining in a way that I can’t effectively explain. That’s not to say that people should stop asking – definitely don’t stop doing that. I just want to communicate to you that back to back disability explanations don’t come free: it’s new for me to meet people and my disability to be one of the first things we talk about, and it’s new for me to have to talk about it this much.

One of the most heartwarming things I experienced after my announcement in Ukraine was towards the end of the summer. I was walking back from running an activity for some of the kids when 2 girls asked me if I could please explain to them why I wear my shoes. For the first time ever, I turned to someone who’d asked me to spontaneously offload personal details, and I said ‘do you mind if I tell you tomorrow? Because it’s 11am and 25 people have already asked me today.’. 25 isn’t an exaggeration by the way, I’d counted. And at that moment I realised that I’d always answered people’s questions straight away because I’d never wanted anyone to get embarrassed or feel upset about asking me. I also realised that subconsciously, when people see something as physically obvious as a disability, they think that on some level they’re entitled to an explanation. This, of course, is problematic.

I did explain it to these girls though since they asked so nicely, but they had to wait a day.

So, I’m in a weird spot now because I’m seeing myself doing things I never would’ve done two years ago, like walk around my university library with my callipers on full show and mentioning how I’m physically disabled in the first few moments of speaking to people. Meanwhile, the stubborn part of me which never wants to be defined – positively or negatively – by my Spina Bifida persists, and it occasionally dismisses my physical successes as just what everybody does.

And I know that my writing style leans towards a nice, neat conclusion that pulls all of this together, but not today my friends. My relationship with my body is complicated, and that’s just it.