What do you mean you can’t feel it?

What do you mean you can’t feel it?

When we think about physical disability, a lot of the time many of us conjure the mental image of a severely physically disabled person who’s permanently confined to a wheelchair, miserable, and in serious need of society’s help. And if you’ve read enough of my blogs, then hopefully you’ll understand why this way of thinking is immensely damaging to literally everyone – regardless of whether you’re disabled or not. But today, the assumption about disability that I want to focus on is the one we make about the relationship between physical disability and pain.

A lot of the time, whether we’re watching an episode of DIY SOS, or Children in Need, or Me Before You, many of us assume that if a person has mild to severe physical ailments, then they’re probably in a lot of pain because of it. You hear that I’ve got Spina Bifida, you see me walking down the street wearing callipers, or getting out of a car after putting a disabled badge on display, and you figure that I probably have to take medication and I experience pain in my feet. (Obviously, you might not think about it at all, but if you are thinking about it, then this is often where the brain goes). It’s not an unfair assumption, and I’m not offended whenever people ask me whether I’m in pain, but it always makes for a fun back-and-forth when I then say that actually, one of the reasons why I develop problems is because I don’t experience any pain in my feet.

This is normally how it goes:

*at some point in the conversation the fact that I’m disabled has cropped up*

Them: So is it really painful?

Me: No, I actually don’t have much sensation below the knee on either leg. I can feel the inside, but not the outside. And I can’t move any of my toes – except my big toes, but even then, not really.

Them: Woah, that must be weird. Nice that you can’t feel if you’ve stood on something, though.

Me: Umm…hahahha…not really…If I stand on something, then I’m not gunna feel it, so I’m just gunna keep walking on it until it gets wedged further into my foot. My shoe could be filling up with blood and I’m not gunna know until I take it off. Then I’ve also got really bad circulation, so that’s going to take ages to heal. So it’d be kind of helpful for me to be able to feel it because then I’d know to not walk. But I get what you mean hahaha, it does mean I can kind of ignore it if I have a problem.

*and, scene.*

Basically, my relationship with pain in my legs is love-hate. If I had pain, then we probably could’ve avoided most of my foot problems – let alone the COUNTLESS internal monologues of stress, trying to guess whether something’s kicking off in my shoe – but obviously, I also don’t hate that someone can stand on my foot and it’s all good. Plus, it does make for hilarious stories, like how one time a guy told me he’d been playing footsie with me under the table for a literal hour and I’d had absolutely no clue…Or how every time somebody apologies profusely for standing on me, or accidentally kicking my foot, I tell them they can do it again if they want; it doesn’t bother me. Or that time that I didn’t know my friend’s house had underfloor heating until I fell over.

If there’s one thing that I’m trying to do on these online pages when I talk about disability, it’s to show you that that word is used to describe an infinite amount of variations of the human body. We use it when we deem something to have ‘gone wrong’, and in viewing it negatively, we always assume the worst. And I’m not saying that disability doesn’t come with problems – of course it does. There are disabled people who experience huge amounts of physical pain, who have to take loads of medication, or who are reliant on someone else to help them complete the most basic of tasks, but that isn’t all their lives are, nor is every assumption of what a disability is relevant to every disabled person.

But I’m not bringing this up to incite the ‘omg I hate people, why is everyone so closed-minded with their understanding of disability?’ response. Honestly, as you can see in the generalised example I gave before, I have a laugh with pretty much every person who asks me about how much pain I experience.

The fact is, society has a super problematic understanding of, and approach toward disability, but to sort that out, we’ve got to have conversations where it’s comfortable enough for somebody to get it wrong, then learn why without being humiliated or villainised for not knowing something that they have no direct experience of. As the person who’s being stereotyped, and treated a certain way because of lame assumptions, that can be difficult sometimes – understatement of the year. But you’d hope that by staying patient, and explaining it this time, the next time that that person comes across somebody with a disability, they’ll be better equipped to ask questions rather than make assumptions.

You’d hope.

One thought on “What do you mean you can’t feel it?

  1. The last paragraph hits very comfortably close to home (unfortunately 😅). I really enjoy these blogs, when I read them that is, because it’s informative and relatable (to a degree). Lost track of my point, so I’ll say “nice one m8. Would read again. 10 out of 10 GGs.”

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