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.

Can you be hot AND disabled?

Can you be hot AND disabled?

On Monday I had some really gratifying conversations with my group of friends. All the points we made and discussed, are points that I want to write about in future blogs but one in particular sparked this entry.

For a while I’ve been wanting to discuss what it’s like to be disabled in the dating world, but I’ve never really known how to articulate it. The truth is: I find it really unfortunate just how much it probably does affect how I’m perceived by boys, because it’s something about myself that I absolutely cannot control.

When my friend asked me whether I think my disability affects my dating life, my immediate answer was: yes, but I don’t think that anyone ever told me. My response may come as a surprise because as I’ve said before, I’m aware that once someone spends time with me, it’s very easy to forget that I’m disabled.

The thing is though, no matter how confident or independent or self-sufficient I am, I will always be disabled and will always have to live my life with certain adaptations for my health. When people get into a romantic relationship with someone, everyone has some preconceived idea about what it’s going to be like. These preconceptions come from all the popular culture and media we consume on a day to day basis – and have done for years. But very rarely does that popular culture include examples of relationships where one person is physically disabled and the other is not.

In the past year, I’ve gotten particularly impatient with my failed attempts at romance – as you’ve probably noticed hehe. Whenever one has failed, like most people I find myself looking for reassurance that sometimes it can work out. So I look around me, and at the media. But never ever ever ever do I see myself reflected in the relationships shown. I don’t often see couples on the street where one of the two is disabled. I definitely barely see it on Instagram. And I’m not sure that I’ve ever seen a famous person with a physically disabled partner walk a red carpet.

If I have seen a couple like this in the media or popular culture, it’s often felt tokenistic. By this I mean, in television programmes or Snapchat ‘Born Different’ stories it’s examples of severely disabled people and their partners. Whilst it’s (rightfully) always a celebration of those love stories, I still don’t feel represented or particularly comforted by them. And with that, the disability always seems to overwhelm everything else that makes that person attractive. Can you not be hot and disabled? Can that not be a thing too?

I don’t feel disabled enough to relate to those permanently in a wheelchair or with more severe illnesses than I. But then I’m still disabled, so I can’t fully relate to anyone who isn’t.

Since we don’t see examples of couples where one person is (not severely) physically disabled, subconsciously that plays a part in how we date. I’m not trying to say that it makes someone a bad person for not finding someone with a disability attractive, because that might not even play a part in how you feel about them. But then again, the intimidation which might come with how little you can relate to that part of someone’s life and the degree to which you feel prepared to try, might well shape your decision about dating someone.

Explaining what it’s like to be disabled to someone who has no idea, is an impossible task because no matter how hard they try, they just can’t access that type of human experience. So that’s obviously going to be intimidating when dating someone because you literally canNOT connect with them on such a huge level. And that might not be what you want. I totally get it.

In light of this, this blog is not meant to be a guilt-trip; I understand why people might do what they do – both consciously and subconsciously – when it comes to dating. Obviously I’d love to feel more represented, and to feel that my disability 100% doesn’t affect my dating life, but I can’t change the world overnight with my ramblings.

What is important, is that you know that just because someone has an issue that you know nothing about, that that doesn’t then mean that you would be useless at helping them with it. Disability needs to be more visible and in all honesty, we need to see more relationships in the public eye where a disabled person has an ‘able’ partner.

The day I see someone ridiculously famous walk a red carpet hand in hand with their physically disabled boyfriend/girlfriend, I think I might actually shed a tear.