The other week I posted a video on TikTok which has since received over a million views, tens of thousands of likes, and hundreds of comments – not all of them kind. In the video, I described a very wholesome encounter I’d had with a train conductor where when I’d asked him for help with finding a seat (because a spontaneous reduction of carriages on the train had made all seat reservations disappear), he’d not only sorted me out, but he did it in a way which included asking if I was comfortable with every action he took. For example, before he announced to everyone that I was disabled so please could somebody give me their seat, he asked if I was okay with him doing that first. Every part of me screamed ‘no no no no no, I hate you telling these strangers that I’m disabled’, but I needed to sit down, so I bit the inside of my cheek and I said ‘sure, that’s fine, thank you’.

A couple of the comments on this video were questioning how it makes sense for me to say that I hate bringing my disability up to strangers when I talk about it so openly on my social media and within this blog. At first glance, it might look like they’re giving me a tasty bit of hate on a random Tuesday afternoon – and that may well have been the intention – however, I do think they pose a fair question.

My relationship with my disability is complicated: it has always been complicated, and it will probably continue to be that way. I’ve told you before about how I struggle with the notion of being proud of my disability, but also how I’ve no problem with answering a stranger’s questions as long as they’ve said it in a way that doesn’t include the phrase ‘what’s wrong with you?’. I know what I am and I know that that includes Spina Bifida, and yet, I will rarely (if ever) ask a person to stand up on a bus or a train to let me sit down. I’d rather sit on the floor, or just ignore the soreness spreading in my knees as I stand. And I’ll rarely ever use the disabled toilet because I don’t see myself as requiring it. Even though sometimes that queue in a nightclub has me standing for far longer than I should.

This being said, I am learning to change my behaviour by trying to accept that there’s nothing wrong with me asking for help if I need it. Even writing that sentence, I know that people will jump straight to outrage that I even consider it a big deal at all, but I can’t explain to you how much I’ve been conditioned by the world as a young disabled woman to shut up and get on with things: to not complain, to not ask for help on the off chance that that request will leave me being dependent on others.

I’ve seen eyes roll when I’ve gently moved to the subject of changing a plan to help my feet; I’ve seen people close to me at the time try to find any excuse to do things the way they normally would had I not been there, and those moments have hurt. A trope associated with the life of a disabled person is that their medical issues cause those around them to change everything to cater to their needs; everyone close becomes a carer and the person with the disability, a burden. It’s an untrue, unfair, and immensely damaging idea that I have vehemently fought against as long as I can remember, but this has led me to feel tangible guilt for asking people to help me out on occasion.

So I can write blogs like this one and make silly videos where I talk about my Spina Bifida because your engagement with them is entirely up to you. But if I have to look someone in the eye – and they’re not my family or my closest friends – and ask them to walk slower, tell me the walking distances from this place to the next, or to please give me their seat, I feel the tears start to come and the embarrassment fills me. I know I need it to take care of myself, but I don’t want to ask you to do anything you wouldn’t normally do. It doesn’t feel fair. I don’t want it to seem like I can’t take care of myself, I don’t want you to think less of me, and I don’t want to make you feel guilted into doing something you don’t want to do. However, as another commenter said (beautifully, I’d like to add): ‘that’s not charity, that’s society’.

Away from my emotional reactions, I know that my guilt isn’t warranted, given that I don’t tend to be asking for much in these situations. So, I can’t promise you that I’ll never feel the guilt – I think part of me is just built that way – but I do try to not let it stop me from asking for help quite so often.