You can’t sit with me

You can’t sit with me

The question I get asked the most in relation to my disability, and the one I find the most difficult to answer is how I feel about the image of my shoes. Do I like them? Do I have to wear them all the time? Why does it matter what they look like at all, if they help me to walk?

If you look at my social media, then odds are you’re going to think that I don’t mind what my callipers look like, and maybe (at a push), I’ve made it seem like they make me feel quite confident. But sharing videos and images which include my shoes, or me walking, is a new thing I’m consciously doing to try and get used to what they look like, rather than something which comes naturally.

It’s not that I hate what they look like, or that I wish I didn’t have to wear them, however, it’s also not honest for me to say that I like my shoes or would choose them if I could. If I could. That’s the most important point. I don’t have a choice and have never had a choice, so the concept of wanting to wear something else feels pointless because I can’t. Therefore when I was a little girl, I just didn’t think about whether my callipers looked good, because in order for me to go anywhere or do anything, they were my only option.

The first time I actively considered their appearance was when I was in Year 11 and I was getting ready for prom with my friends; we all had beautiful (extortionately expensive – thanks Mum and Dad 😀 ) dresses, but my friends could wear pairs of matching heels with their outfits, whereas I had one option for footwear. An option which was definitely not the one I would’ve chosen if the focus what aesthetics. But again, if I wanted to actually go to the prom, then that was the one I had to wear, so it wasn’t worth spending much time sulking about it.

Moments like my Year 11 prom have continued in the years since; weddings, university balls, or nights out where I probably would’ve preferred matching my outfit with my shoes but haven’t moped too much about not being able to, to save myself needless upset. They weren’t often though, and they were fleeting. The most damaging time for my self-esteem relating to my shoes was university, where my Northernness and my personality made me feel like I didn’t fit so much at times, that I couldn’t be bothered for the disability to add another reason to stand out, so I mostly wore outfits covering my callipers for the first couple of years. One time, I remember laughing when a lad in a bar had been giving me the eye for a while, until he eventually came over to talk to me, only to spot my shoes then spin 180 and walk the other way. It was such a repulsive action that I genuinely found it funny and wasn’t hurt much by it, but it did sum up the way I felt seen by some of those around me at that time.

Since then, I’ve gotten back to the level of comfort I felt in my shoes before I became aware of how nasty the world can be at times. I surround myself with family and friends who regularly remind me that there’s nothing wrong with my shoes, or how I walk, and making videos for social media has forced a realisation that actually, my shoes can look quite cool with some outfits. Still, there’s something in my head that whispers that a man I like isn’t going to be interested in me if he sees my social media first; if he sees the conversations and expressions of disability, before he talks to me. I know it’s not logical or fair, but that little voice still tells me that if a lad I’ve met in person then sees and likes a post where he can see my callipers, then he’s not understood the video. He’s not realised what he’s watching.

It’s internalised ableism and it’s difficult to get rid of completely because according to hundreds of years of history and literature, disabled bodies aren’t supposed to be attractive – that doesn’t mean that they aren’t (OF COURSE), but I also grew up in this ableist society too so no matter my parents’, friends’, or wider family’s efforts, some aspects of the negative views towards disability are going to seep through. I do know the ideas aren’t fair though, so on the days when I don’t like what my shoes look like, I try to tell the voice in my head to quieten down. It’s the same voice everyone has – the one that tells you yes, you do look fat in that, or yes, everyone here does find you boring – it’s just mine has a fun, extra piece of ammo for the bitching.

Which is great!

But, we try not to end on downers here, so I want to finish this month’s blog by reminding myself that the voice is just a mean girl. And she’s not invited to the party.

Oh my god, I’m so embarrassed

Oh my god, I’m so embarrassed

I, like everyone on the planet, struggle with real, uncontrolled vulnerability. As one of my best friends made clear to me once, I express the emotionally vulnerable parts of myself in a very measured way; what I say isn’t untrue, or dishonest, it’s just I lead the expression of vulnerability and would find it far more difficult to relax into a situation and let the vulnerability happen.

For a long time, when I’ve been romantically interested in lads, I’ve gone in all guns blazing because another thing I struggle to do is not say what’s on my mind, and when that hasn’t gone so well, I’ve had my sad girl hours, telling myself it was rejection. But then friends and lads I’ve dated, have also told me that I’m difficult to read, which has seemed like a total contradiction. What can be difficult to read about me saying exactly what I mean?

Have I actually said what I wanted to, though? Or did I sugarcoat it in vagueness, distraction, or flirtation to avoid misunderstanding, judgment, or rejection?

A couple of years ago, one of my close friends jokingly said that she could never live with me because I’m too needy. She laughed, I thought it rude and unfair but put it down to a poorly-judged joke. Then she said it again during another social situation, and eventually it just became a joke she sometimes fell back on. That one stuck with me and went straight into the part of my brain where the various other piercing comments I’ve had from other people live. Like when lads I’ve been dating have called me ‘too much’, or the more back-handed ‘you’re actually quite sexy’ said with an air of surprise just to make my eyes narrow even more.

All of these comments link up to illustrate why I’m cautious about being vulnerable: I don’t want to be judged as less or weak. I’m a young woman, and I know the way those perceived weaknesses could negatively impact how people see and treat me, because patriarchy doesn’t often allow for women to have imperfections and still be seen as valid. Further to that though, I have a physical disability, and whenever I’ve been in a moment with my feet which has forced me to be totally physically dependent on others, I’ve felt pointless. I’ve continued on as normal to try to distract everyone, but in the back of my head, I’ve just got this intense embarrassment that even though internally I’m the same as I was yesterday, now I can’t even open a door on my own.

Nobody likes feeling weak. And even though there’s absolutely nothing wrong with asking for help when you need it, and even though I know I don’t become pointless or change when my disability pipes up, that’s how it feels sometimes. It feels humiliating, and it leads me to always think silly things like if a man I fancied saw me on crutches or talking about my disability on my social media pages, then he wouldn’t look twice. There’s internalised ableism in these thought processes – no doubt about that – but also there are real, tangible facts that disability is viewed by the world as being so awful for a person that it entirely consumes them and their life. So, you expend so much time and energy trying to prove to people that that isn’t all you are, that it makes the times when your day is kind of ruled by your disability feel even worse because how can you distract everyone from paying attention to it when you need them to wait for you so you can hop up the stairs on your crutches? (Because no, there isn’t a working lift).

I love sharing my life with other people and telling them the reality of what it’s like to be a young, physically disabled woman. I know I’m so much more than my condition, and I know that people think of me as so much more than that, so I needn’t worry about how I’m perceived. Nonetheless, as I sit on this sofa with a bandage on my foot, and bruises on my right side from using crutches and falling when trying to protect the bandage, I’d be lying if I said that I feel my best. I don’t feel bad, because I’m inside and therefore not stressed by the embarrassment of others seeing me this way, but I don’t like it. I don’t like that one tiny cut on the side of my foot can leave me so vulnerable. I’d rather it hurt for a couple of days but heal like everyone else.

Maybe this last paragraph isn’t necessary, but I need to say that this isn’t me wishing my body away, or disowning my Spina Bifida, it’s simply an attempt to explain that I don’t wake up every day and feel okay with having it. I know it’ll be fine, and that it’s nothing to feel embarrassed about, but logic and emotions aren’t always compatible. And so, I’m excited for when I can walk to the kitchen using both of my legs again. There’s no infection, so hopefully not long now. 🙂

What’s the rush?

What’s the rush?

A few weeks ago, I don’t know what it was, but it seemed like everyone around me was just having a sh*t time of it. The sun had started to come out and we were all looking to plans of traveling, but in those lucid moments in between work days and going to sleep, so many of my friends were telling me that they felt completely lost.

For me, I was struggling with feeling really lonely romantically: I’d seen two of my closest friends starting to develop feelings for lads, causing me to look at where I was with that kind of thing, only to see a tumbleweed go across my phone screen. And as I’ve explained before, when I’m feeling lonely I do tend to feel it quite strongly; listening to sad songs whilst I drive from one job to the next. But then, I’ve also not grown up being allowed to wallow for too long – this does sometimes mean I’m not great at allowing myself to sit in my sadness, which isn’t always healthy, but then it also leads me to find solutions – so I decided that if I was going to feel lonely because I’m not texting anyone, then I should probably reply to somebody on Hinge…Since, you know, you’ve kind of got to talk to someone to have someone talk to you.

Then I dated a fit man for a month, so go figure. Obviously, given that I’m still single, it didn’t end in the preferred way but hey, everything’s a learning curve.

My friends and I weren’t just feeling like sh*t because the dating scene is a mess though. It seemed like all of us were re-evaluating every aspect of our lives – especially our careers – and each of us was just totally overwhelmed by the amount we felt we had to do and the fear that we weren’t where we were ‘supposed’ to be. Even though, this notion of ‘supposed’ never makes much sense if you deep it anyway, because who’s this big eye in the sky deciding what position my life should’ve reached by June 2023? And why’s it so bothered?

There is no correct way to do life, and not one of us will have the same life or career trajectory as the other, but we’re putting so much pressure on ourselves to reach a version of success that we couldn’t even describe if somebody asked us. This goes back to those booklets we had to fill out at school though, where we decided where we’d be at every age until we retired. Except, those booklets always failed to include the idea that that’s not how life works – for example, I don’t remember seeing ‘global pandemic’ in bold across 2019-2021 – or the fact that there’s actually no need for you to decide everything all at once. Therefore, I’m trying my best to remind myself of this every time I feel like I’m drowning in to-do lists and self-criticism.

I asked my housemate what she does when she’s in a rut and she said that she calls her parents. I do the same. So I’d like to take a moment to say that just because you’re an independent adult in most aspects of your life, if you feel like you need your Mum or Dad, then your age doesn’t matter. Sometimes their advice, or the act of having a conversation with them, is what you need. It doesn’t mean that you can’t function at all as an adult. That being said, if you still don’t know how to do your own laundry or how to cook a meal…then you should probably give that some immediate attention…just saying.

When I feel naff, I try to make time for the things I know will make me happy, like going to see some live music with a friend, or sitting next to a river in the middle of nowhere for an hour to read a book, or sparking a silly conversation on the family group chat. Anything to give me the dopamine boost I need to regroup and work the bigger things out in a calmer mindset. So, without meaning to sound like a guru here, if you’re feeling like how I described my own mindset last month as you read this, then try to think of what might get you back on track.

Because sometimes it feels like we’re all rushing around, and there’s no need to be so frantic.