Out of all of my blogs, this one is the one that I’m most unsure about because I worry about the assumptions you’ll make when you can’t see the person talking to you. I don’t want you to have a picture of me that isn’t what I’m really like just because I’ve now told you that I’m disabled. Hence why this post wasn’t one of my first…

When meeting new people, whether that be in Primary or Secondary School, at a party, in an airport, at work or even just meeting my brothers’ girlfriends, my disability has sparked interest. It doesn’t affect my speech, my brain or much of my appearance, so it’s almost hidden. This has meant that most people don’t always realise I am disabled until they spot my legs and after speaking to me for a while they delicately venture to say: ‘is it okay if I ask about why you have to wear those shoes?’. And generally, I prefer people to ask since it shows that they’re interested but also it means that they won’t continue to stare. Which, I’d like to mention is always obvious, no matter how subtle you think you’re being. Also, I use ‘generally’ here because sometimes people have opted for: ‘what’s wrong with you?’ as their phrasing. My reaction to this question is always going to be a bit radgy, seen as there’s nothing wrong with me but what’s wrong with you for phrasing it like that buddy? However, *exhale*, most people mean well so occasionally you have to swallow your pride and go with what you know they meant.

First and foremost, disability is an umbrella term. Even if 2 people have the same disability on a piece of paper, biology is such that 2 bodies will never be exactly the same. So it follows that those 2 individuals will have different variations of the same thing, and extremely different experiences of living with it. My Spina Bifida is a lump on my lower back which holds a ball of knotted nerves inside of it. These nerves are those which would allow me to have complete feeling and movement in both of my lower legs. During my childhood I had 6 operations which sought to drain the fluid in my lump and to correct the position of both of my feet because to put it simply: I can’t walk properly. I also have bad circulation in both of my lower legs and feet, meaning that if I’m cut or have a blister, not only can I not feel the pain (and therefore regulate putting pressure onto it), but it takes a lot longer to heal and is then vulnerable to infection. These cuts or blisters can be caused by anything ranging from a fold in my sock to me walking too far or standing for too long. If I develop a blister and/or an infection, I can’t walk at all and have to use a wheelchair until it heals.

I HATE my wheelchair more than anything in the world. Even now, the idea of me having to use it would reduce me to tears. The reason being that generally I don’t have to use one and am naturally very self-sufficient, independent and stubborn. My wheelchair strips me of my independence and when I’m in it, I never know how long it’ll be until I’m out and myself again. I was never encouraged to feel too sorry for myself during these times, as I always knew that I’d get out of the chair and that there are so many people in the world without that luxury. But that approach doesn’t really make it better in the moment.

To be honest, my perception of disability is complicated. I’ve definitely always struggled to communicate my true feelings about it (like now lol) because when I say things like I don’t want to join my University’s disabled society, it comes across as if I’m rejecting the disabled community. In reality I think that what I reject is the implication that because I’m disabled by definition, that that is all I am as a person. I see it as me being disabled first and everything else second, which is not how I ever want to be described. I’m proud to be disabled, and I think that disability awareness and support groups are vital for society, it’s just that I’d prefer for my disability to be peripheral in discussions rather than the focus. However it’s becoming painfully obvious to me as I grow into the world, that I need to be more explicit about my experiences as a disabled person since there’s just so little varied representation out there.

I don’t love my Spina Bifida but I do love how it’s shaped me, and I categorically do not want to be pitied or patronised, because that never does anyone any good. Everyone has their own issues to deal with and mine just happens to be this. I’ve never wanted to dwell on it but I think I’m learning now that there’s a difference between self-pitying and just describing how it affects my life. In order to be accepted and treated equally, people need to talk about things such as disabilities more often so that when they’re brought up everyone doesn’t apologise for asking. It shouldn’t always be a touchy subject because it doesn’t have to be a negative conversation.

So I’ll do my best to be that person to talk about it, knowing that for me disability is only one of the many defining factors of who I am as a human being.