Forcing myself to like this

Forcing myself to like this

Something I get asked a lot when I speak about my disability is whether I’m proud to have it, and if you’ve read more than one of these blogs then you may already know that that is a bit of a complicated question for me. My immediate reaction is to say ‘no’ because I’m not so much proud of the disability itself – given that the Spina Bifida in isolation contributes to 80% of the stresses in my life – though I am probably proud of how I deal with it. But even then, I don’t really know that that’s anything to be actively proud of because I can’t be or live any other way. Maybe you judge that as me thinking too far into it, but I just don’t see these well-intentioned attempts by able-bodied people to understand what it’s like to have a disability as leading to one-sentence responses.

And one aspect of my opinion of my disability which will definitely throw people – especially given how I present myself on social media – is the way I feel about how my shoes look. If you watch my videos then you may assume that I don’t really care about people seeing my shoes, but the reality is that by doing these videos and showing my callipers at the end of them, that’s me making an active effort to like how they, and my legs in them, look. Acceptance of their image when I’m wearing my shoes definitely doesn’t come naturally to me.

I think what’s at the heart of that is that I’ve never considered myself as disabled by my body – unless I’m in a hospital gown, putting a bandage on, or in a wheelchair, and even in those moments the extent of my disability has always caught me off guard which is what makes the experience so traumatic. That probably sounds quite strange, though. That I have times when I pull my car into a disabled space, put the handbrake up, and sit there thinking ‘lol it’s kinda weird that I’m actually disabled’ as I put my blue badge on my dashboard.

Maybe it’s because I don’t have any pain and because my disability doesn’t affect my mind or my appearance unless I look down, that I’ve always been so good at ignoring it – a lot of times to my own detriment but hey, we do what we can. So it’s only when I’m confronted by my reflection in a shop window or in videos and photographs that I actually see my disabled body. And I’ll be honest, I don’t like it. What I see is all the minute details of my Spina Bifida: my left foot curving inwards because the operations never quite worked, a slight limp as I move, and the unusual (kinda jarring) shape of my metal callipers against my legs. So, for a very long time, I just didn’t look because I didn’t want to know – still now, even after all these Instagram and TikTok videos, you’ll probably see me bow my head if I have to walk toward a full-length mirror or a shop window and I still ask my mum to take the photograph from the waist up.

I’m getting better though! I don’t actually flinch if I see myself walking in videos or a reflection anymore – I’d still probably rather not see it, but it doesn’t sting my self-esteem quite so much now.

My parents can get very frustrated with me when I’ve brought this kind of thing up because it hurts them that there’s a part of myself that I’m still struggling to accept; I remember my mum saying to me once (through love and irritation) that there’s nothing wrong with my callipers making me look disabled because I am, and will always be disabled, so that’s just what I look like. And she’s right. But society says that that’s bad, that’s ugly, that’s pitiful, so no matter how right my mum is, it’s an active effort to agree with her every day of the week – especially when you’re sitting on the tube waiting for the person across from you to look up and see that there’s a human attached to the shoes they’ve been staring at for 4 minutes.

So yes I know that there’s absolutely nothing wrong with the look of my callipers – with some outfits I’ve even realised that they look quite cool, those comments from people weren’t based on pity in the end – and I would never ever ever (!) say that there’s anything wrong with looking like you are disabled, but we say things to ourselves that we wouldn’t dare say to others, so even that isn’t quite so black and white if it’s applied to your view of yourself.

Nonetheless, I’m doing my best to accept that part of myself without conditions, and my best is all I can ever give.

I won’t be told

I won’t be told

When I was nearing the end of my school years and it was reaching the point where I had to decide what I was going to do after my A-Levels, I quickly came to the conclusion that I wanted to take a break from education and go see some of the world on my own.

As children, my brothers and I were always encouraged to learn as much as we could about societies – historical and contemporary – and to take every opportunity to explore, so the idea of travel was never particularly daunting to any of us I don’t think. When I told my parents that I wanted to do the whole solo travel gap year thing, they were hugely supportive, but my Spina Bifida did mean that the prospect of me traveling to, and knocking about on my own in a different country was a little more complicated than when my older brother did it a couple of years before me.

I started working and saving for my travels when I was 16, and as soon as I left school, I was working three jobs to fund all of my trips because I wanted the year before university to be entirely my own, and I didn’t want my parents to feel any pressure to financially support me through it when they had their own bills to pay, or their own holiday to save up for. More than this though, I wanted to show myself that I could look after my disability no matter where I was in the world, or what I was doing. I’d fought against it for years and had subsequently landed myself in a wheelchair for periods of time, so in my mid-teens, I’d had this niggling feeling that maybe I was going to have to limit myself because of my Spina Bifida after all. Maybe, everything my parents and family had taught me about me being able to do whatever I wanted to didn’t matter, because maybe that kind of thinking just wasn’t practical if you wear callipers.

But I’m nothing if not stubborn, so I put the niggling feeling to the test by sending myself off to four different countries on my own. And do you know what, we not only managed it, we THRIVED. I lived in the jungle, hours away from any hospital; in the middle of a bustling city where all the signs are written in a script completely different from my native tongue; in a tent on a tiny private island surrounded by the Pacific Ocean where I washed my dishes in the sea, and I worked 17-hour days in the mountains where I was, in fact, constantly on my feet.

Since then, I’ve continued to travel on my own to new and beautiful places when I can – most recently, going to visit my parents in Rio de Janeiro. But what I want to emphasise is that when I take these trips, I do somewhat risk the condition of my feet. Before I went on my gap year, I remember the face of the doctor who’d seen me through three operations and more blisters and infections than I’d ever care to count, and it was one of total support because she knows who I am aside from my disability and that I was going to do it, but it was also one of ‘oh my god, this could end really badly’. And to be frank, there were moments during those trips that it wasn’t looking great. I mean, in South Korea, I was sending photographs of my feet to this doctor at home asking if I had an infection, then sitting in A&E in Seoul, communicating the nuances of my disability to a (very lovely) doctor using my amateur Korean language abilities. (It’s one thing to know how to ask for two glasses of wine and two bowls of bibimbap, and entirely another to explain diminished sensation from the knee down on both legs and scars from multiple tendon transfers…). But we managed it, I didn’t have an infection, and I was fine. Then when I was in Ukraine, I ended up crying in my room one day because I couldn’t work; my skin was looking like it was about to get a blister because I’d been working like crazy without my normal medical treatment in 30-degree heat for two months. Not a shock, but infuriating nonetheless. My colleagues (friends) told me to calm down, and one of the lads carried me to the evening activity on his back to save me from walking for the evening. Again, I managed it, and I was fine.

If you read my medical notes and the long lists of all the times my disability has kicked off, then you would probably think that I should stay off of my feet as much as possible. That there are so many things I can’t or shouldn’t do. So many places that I can’t or shouldn’t go. You’d think that the second I leave my car in England and get on a plane to a country where I’m going to have to walk far more than I ever would normally, I’m making the odds of me ending up in hospital with a cannula in my arm far more likely than if I was to just stay at home, sit on my backside, and go work in a call centre or behind a desk forever. And you’d be correct. But I won’t be told.

The words on those pieces of paper define my disability according to its worst moments, but my life is not that. I’m not that. At least, not all of the time. Sometimes I am in hospital with an infection – I was at the start of this year – except those moments don’t happen very often and nothing terrible has ever happened to my feet whilst I’ve been travelling because I am careful. It’s not just about putting all the practical things in place to take care of my feet whilst I travel though, it’s about sincerely believing that I can do it – regardless of what my medical notes say. Yes, my stubbornness has me taking flucloxacillin sometimes because I’ve walked too much and given myself a blister that has gotten infected, but it also sent me to the other side of the world when I was 19.

I am not stupid, I do my best to take care of my disability, but I was never good with someone telling me that I can’t or I shouldn’t just because I have Spina Bifida. So, I’m cool with never running a marathon but just because I can’t do one thing doesn’t mean that every other human experience is completely inaccessible. I just might have to consider a few extra things.

You’re not really though, are you?

You’re not really though, are you?

A few days ago I had an interaction with a man that has really stuck with me. We’d just met, in the kind of setting where you hadn’t chosen each other’s company, but you were probably going to be sitting together for a while so it’d be best if you struck up some type of conversation. The first part of our chat was like all others: asking for names, why you’re here, where are you from, and various other painfully mundane topics for small talk. Eventually, we reached the part of the conversation where he wanted to know why I had pieces of metal coming up from my shoes and like always, I summarised my disability as clearly and simply as is possible in a casual getting-to-know-you chat.

This part of our interaction wasn’t a problem for me; I’m not exactly shy on the subject. It was the way he went on to dismiss me by saying ‘you’re not disabled though, so just ignore anyone who judges you’ after I’d said that there are some instances when I wear clothes to cover my shoes because I don’t want the preconceptions. That was when I got a little wound up. And on the surface, it might sound to you like this man was just being nice, by saying that anybody who treats me differently because they see my shoes is just a horrible person who I shouldn’t take any notice of. Except, this whole living with a disability thing isn’t that simple.

First of all, I don’t need a man I just met talking over me and telling me what I am. But aside from that unfortunate aspect of this particular conversation, let me now explain why people saying these things to me is problematic, regardless of how well it’s meant.

Let’s take the beginning of the sentence: ‘you’re not disabled though’. When he said this, I immediately came back with ‘but I am’, to which he replied ‘ yeah but not really’. And that! That right there is a blisteringly clear example of how our society’s history has led people to think that ‘a disabled person’ is somebody who is totally unable to do anything for themselves; they’re probably in a wheelchair, and their image is totally saturated with pity. Nobody disabled, regardless of whether they’re in a wheelchair or need constant care fits this weak and pitiful narrative, but I’m well aware of the fact that the nature of my Spina Bifida and every other part of who I am as a person makes it so easy for people to assume that my condition can’t be that bad. I might technically be ‘disabled’ on a medical record, but I’m not actually and any time I openly describe myself using this word, I’m kind of just looking for attention.

You might think that I’m being oversensitive about the chat I had with this man, but you wouldn’t believe how much time and energy I have to spend almost begging people to believe that I do have a physical disability when I need the help. When I was 16 years old I had to reapply for my disability benefits (which include my access to an adapted car) because the government at the time had decided that too many people were taking advantage of them, so called everybody in for reapplication. At 16 I was judged to be old enough to handle everything on my own (a ludicrous notion in itself), so I went into the first consultation with a nurse alone. She asked me about how far I can walk, how many operations I’d had, and how my disability affects me, and then she asked me if I have any friends.

I was entirely myself in this interview and because I didn’t cower or fit the image of the pitiful disabled person, the government took everything away from me. It was only after months of appeals and emotional trauma where I had to reduce myself to fit this image so the government would believe me when I said that I need this help so that I can live a full life, that I got everything back.

So yes, I am disabled even though it might surprise you to learn that after seeing or talking to me. And yes, people shouldn’t judge me or treat me differently because of that fact. But they do. Therefore, if you are surprised that I’m disabled then ask yourself why you reacted that way, rather than dismiss the existence or severity of my Spina Bifida.

I’ve not written this because I think that anyone who’s ever said variations of what this man said to me the other day are bad people with nasty intentions. Quite the opposite. I’ve written it because I want individuals to take more notice of what they perceive ‘disabled’ to mean for somebody’s appearance and experience of life, because saying ‘you’re not disabled though’ or ‘ignore people who judge you’ aren’t comforting things to hear, nor are they particularly useful. In fact, they kind of contribute to the problem.

I wish she’d said sorry

I wish she’d said sorry

I’ve spoken so many times about the ways in which society views and treats me because of my physical disability. I’ve talked about it in the context of friendships, romantic relationships, the workplace, and when I’m just walking down the street. But in all this exploration of how my disability can impact different social situations, I haven’t yet mentioned the context where I experience the most infuriating type of judgment; the place where no matter how I approach the situation, it can honestly feel like I’m talking to a brick wall because nobody is taking any notice of the words I just said. Any guesses?

It’s the hospital. Yes! That place where my condition and the symptoms of it are only supposed to be helped!

But before we delve into why I find interactions with medical professionals frustrating more often than I’d like to, first I should mention that the way my disability affects me doesn’t really fall in line with the socially accepted notion that a physical disability = medication and constant hospital appointments. I don’t need to take any medication unless, of course, I have an infection but everybody would need to get on the antibiotics in that case, so no special treatment there. My Spina Bifida is more about careful management of several factors which, if taken care of effectively, help me to avoid getting blisters and subsequent infections.

For instance, I need to have a regular supply of specialised footwear with padding to protect me from standing on anything sharp – that part is just the definition of a working shoe lol, but I need a little extra padding because if I stood on something, I wouldn’t be able to feel it and step off of it when it caused me harm – and then there needs to be enough structure in the shoe to keep my foot in the right position as I walk. This is because my Spina Bifida means that my feet curve outwards, so I need the shoes and callipers to make sure that I can walk straight. These shoes are made out of leather so once the leather softens, they don’t support my foot properly, so we need new ones. It’s a delicate situation, but it’s not complicated.

Aside from footwear, I need regular chiropody to ensure that the SUPER fragile scar tissue on my left foot has enough hard skin over it to protect it, but not too much that it causes me blisters. Again, it’s delicate, but it’s not complicated. Undoubtedly there are other aspects of living that impact the condition of the skin on my feet like the weather, my stress levels, etc, etc, but as far as what medical treatment I need, those two are the main ones. If they’re taken care of in enough time, and with enough careful attention, then it’s pretty easy for me to avoid complications.

IF.

At the start of the year, I had to have an operation on my foot to remove an infection, and since then I’ve been on my best behaviour to ensure that the skin heals. I stayed off of my foot for the best part of a month even though doctors told me that there was no reason why I couldn’t weight bear, and I’ve taken every precaution possible to minimise my walking since I moved back to London. It took until the start of March, but we got there. Then I went to a chiropodist.

Where, I very politely, though clearly, asked the lady to please be extra careful around the area and to just even the parts of my foot where old skin had fallen away unevenly. However, as has been the case at various points in my life when I’ve sat in a doctor’s office, she ignored what I’d said – assuming that she knew better, even though she hadn’t even heard of my disability when I’d mentioned it – and she cut me. I bled, boom, what had been healed when I walked in there, was no longer healed.

And you know what? I wouldn’t even be mad in these situations if the doctor apologised, because people make mistakes and my skin is incredibly delicate. I would’ve still felt the pit of disappointment in my stomach when I saw the blood and knew that that’d sent me back to square one again, but I wouldn’t be angry. What makes me angry in these situations is that somehow I get blamed for it! I’ve had multiple doctors turn around and get all defensive in saying that whenever I see a new doctor I need to be really clear that my skin is delicate, or I need to be really clear about where the padding should be on my shoes or insoles, or that I need to explain what Spina Bifida is and how it affects me, because otherwise the doctor isn’t going to know and they could hurt me.

Only, I just did that. And my words should’ve only been corroborated by everything it says in my notes on your screen. You just didn’t listen to me, (or read them), and now I’m the one who has to go home and do my best to avoid developing an infection so I don’t have to come back. Because trust me, I don’t want to spend any more time in these blue and white walls than I need to.

This is the point in the blog when my conscience tells me to note that this isn’t the experience that I’ve had with all medical professionals; my life has been totally transformed by the amazing treatment I received from some doctors and nurses. I’d also be the first to shout about how the NHS needs to be treated with more respect and given the funding it deserves so that the people working within it have the resources to provide the best care. However, coming across a doctor who fully listens to me and helps me to take care of my disability can honestly feel like finding a needle in a haystack sometimes, and that’s simply not how it should be. I shouldn’t be so used to being ignored and patronised when I walk into a doctor’s office that it comes as a pleasant surprise when I’m actually seen.

I shouldn’t go to such efforts to take care of my disability for three months, go to see a doctor for twenty minutes, and leave with an injury. Or at the very least, without a sorry.

I’m not normally this irritable…

I’m not normally this irritable…

It’s been a running joke in my life for the past six months that I’m the fool who’s working four jobs so I can afford to 1) live in this city, 2) enjoy living in this city, and 3) pursue the career I actually want to do. Obviously, I didn’t move down here expecting to be working in so many different places all of the time, but it became clear to me very quickly that that’s not entirely unusual for people who choose to live in London. I’d be coming in to work as a receptionist in a restaurant, saying I feel stressed out of my mind because I just finished a shift at a different job, only to have a pretty surprising amount of colleagues completely relate because they’d just done the same thing. And if they hadn’t already worked for hours in a different place, they were set to work double in the restaurant.

So, if you don’t have a cushty job with a big salary, or the safety net of inherited wealth, living in London is no easy task. Although, it does seem like even if you do have those things, the culture in this city is to work work work until your body and your mind can’t take it anymore…

Personally, I’ve no problem with grafting for what I want because my ambition and my stubbornness lead me to believe that if I work really hard for it, then I’ll get there; the jury is still out as to whether I’m deluded about that, but we’re doing well so far. However, the amount of work I was doing in the first few months of living in London ended with me having to spend five days in the hospital and feeling pretty highly strung most of the time. But I only acknowledged the extent of this after I’d been away from work for three weeks because of my operation, and I returned to my workplaces.

Needless to say, I love it every time I’m working at a radio station. Yes, I’m often behind the screen and helping with aspects of the production of shows but like most things in this country, the opportunity for progression in London and the ability to meet people you’d just never come across anywhere else makes every shift more exciting than the last. It’s a cliche, but you really have no idea of who you’re going to bump into in the lift, and how that can affect your life. Therefore, every radio shift I do reminds me that I’m exactly where I need to be for what I want to do, and it recharges me for when I then have to go to my other jobs.

At this point though, I don’t want it to seem like I’m showing up at my part-time jobs and hating my life for every second I’m there, because that’s not true. I sincerely love the people I work with and I’ve gained so much from now having experience in the service industry – in fact, I think that everyone should have a service industry job at some point in their lives, just to try and reduce the amount of heat we receive from customers because my GOD people can be awful. Regardless of the laughs I have with my colleagues though, working a silly amount of hours a week in a silly amount of places and being confronted by the public’s lack of manners and ignorance, started to regularly show me parts of my personality that I’m not a huge fan of. Most notably, the fact that I can be a bit of a passive-aggressive b*tch if my patience is tried.

Lol.

I know that my reflex is always to be a nice, open, smiley person, but I’m human and if you have (literally) hundreds of people in one day asking you the same thing; lots of them shouting at you because the environment is loud, and a pretty significant amount just being outright rude towards you, whilst you’re already running on fumes because you’ve worked non-stop for 6,7,8 days in a row, then you might start to answer people’s questions a little passive-aggressively. Or you might walk into the next job and have to stare at the ceiling in the toilets, trying not to cry, after your other boss asked you to work a few extra hours. It’s not surprising that I started to react to situations in this way, but the confrontation and the negativity aren’t me, so there came a point where I had to get rid of one job before those previously small parts of my personality grew into something more solid. And thus, I handed in my resignation for one of the part-time jobs. I’m sad to be leaving my colleagues, but I’ve secured enough radio shifts now to make up the money and I’m looking forward to feeling less irritated by the public.

Without a doubt, it’s a luxury to be able to leave a job the second you see that it’s making you into a person you don’t want to be, and I don’t want to publish this blog without acknowledging that. However, I’ve too often seen people in this country stay in a situation that they truly hate just because they think that it’s less hassle to stay. This goes back to what I was saying last week about change though, in that it’s based on the assumption that if you make a change then everything will be worse, but if it’s really so bad now then wouldn’t it be nice to try and find something better? Again, I know that not everyone is in the financial or circumstantial position to just up and leave their job because they hate it, but hating your job (and low-key hating your life) shouldn’t be as universally accepted as it seems to be in this country. It’s not always easy to do, but we do need to get better at prioritising our own happiness because this working-until-you-croak thing is no way to live.

So if you really and truly hate your job, then see if there’s anything you can do about that, because we spend an awful lot of time in the workplace and it’d be a shame for that time to be saturated in negativity.

Ch ch ch changes

Ch ch ch changes

If I’m trying to be my most pragmatic, sensible self, then I’d like to say that I’m not at all scared of change; in fact, I welcome all of the exciting new things that can come with switching things up. Buuuuuuutttttt, change isn’t always positive, nor are the outcomes ever fixed, so I think it’s better to explain how I’m experiencing change at the minute as it being like I’m sitting on a see-saw: one end has an overwhelming sense of excitement, whilst the other has an equally overwhelming feeling of terror. Which way it leans really depends on the day.

At the very start of this year, I’m not going to lie to you, sitting in a hospital gown with a cannula in my left arm had me leaning all the way over to terror, whereas, when I heard that I’d been given two Christmas shows on BBC Radio 1, you’d best believe the see-saw was so far towards excitement that it looked more like a slide. Then we were feeling a mixture of both when it came to coming back to London after my operation because I’m still having to bandage my foot every day but at least I’m back in the groove of pursuing a radio career. Oh, and I’m not sure if I mentioned it, but I now have parents who live in Rio de Janeiro in Brazil! You know…that really standard change for parents to make to their lives once all of their children have moved out? – I’m completely supportive and excited about that one, but it’d be silly to not include that in the paragraph listing the biggest changes in my life recently.

So then, if you’re an emotional stress head with control freak tendencies like me, how do you cope with so much change in such a short period of time?

Well, it’s definitely made easier by the fact that I’m a cup-half-full kind of a gal, so I do naturally move towards finding the positives in a situation. But I think that the main way I’m dealing with it is by viewing every recent change positively – even the traumatic emergency operation at the start of the year. At the time, I was terrified that my Spina Bifida was about to strip me of my independence just when I needed to be out there grafting for a radio career; that I was going to be sitting in my room alone, resenting my own body as I had to wait around for it to heal. And yes, we’re still not healed, we’re still bandaging every day, but by speaking openly about the operation, and by reframing the whole thing in my head as an accidental injury like a sprained ankle or broken arm, I feel so much less stressed about my foot than I have for a very long time. Furthermore, I’ve now experienced an operation in my adult life, so if something like that happens again, then it won’t be such a nasty shock to the system because at least I’ll remember what the process feels like.

This trust that I can continue to be independent whilst having problems with my feet and living in a city as big as London, also allowed me to only be happy for my parents when they made their move, rather than feeling like I was losing my biggest support network to South America. The fact is, that when you’ve had a physical disability since birth, there’s a period in your late teens and then early twenties where you have to inherit that disability from your parents because even though the Spina Bifida has always belonged to my body, the practicality of dealing with it didn’t really lie with me until I moved out, and even then, it’ll take years before I know all the details of my Spina Bifida the way my parents do. For example, the whole operation thing: I hadn’t done that since I was seven years old, so even though I’m a strong, articulate, independent 23-year-old woman, I had to call my Mum and Dad to ask them the answers to the questions the doctors were asking me about my own body. I have the scars, but I don’t know the technicalities behind why a doctor cut me there.

A lot is changing in my life right now, and in some contexts, I don’t entirely recognise myself. I don’t mean that in a bad way – in fact, I feel far more settled and happier now than I did in my final year of university – it’s just that there’s a lot going on and it sometimes takes my brain a second to keep up. Surrendering to a situation and not focusing on controlling things doesn’t come naturally to me, but coping with change becomes much easier if I do that, thus, going with the flow is the motto right now.

Loosey goosey bby, looOooOooseyy goOoseeyy.

No likey, no lighty

No likey, no lighty

When it comes to romantic relationships, I’ve always felt so sure of what I wanted in a partner. Granted, I’ve gone to and fro when it comes to the importance of each attribute depending on how old I was, where I was living, and what I was doing, but overall, since the age of about 16 I’ve felt certain that I knew exactly what I wanted when it came to romance. But, then I actually started going on dates.

My first ever date was a few months ago and when I tell you that I came away from that date feeling so overwhelmed and confused that I was physically shaking a little, that would not be an exaggeration. Honestly felt like I’d lost my virginity again, it was so intense.

Don’t worry, nothing bad happened on the date to make me so shaken – if anything, the lad was a little too into me, what with trying to kiss me 30 minutes in and talking about taking me to meet his parents shortly after that. Bit heavy. Though on some level, I didn’t really mind him being like that; the thing which threw me for a loop so much was the fact that he was being so publicly affectionate with me and saying all these things without having a milliliter of alcohol in his system and we were in broad daylight. Because when I then sat down to think about it later, I realised that the last time I got close to a lad like that was when I was 17. I’d become so painfully used to boys telling me that they were into me once it’d gotten dark, or once they were a bit drunk, or whilst they already had a girlfriend, or once they thought that they might get the chance to sleep with me, (or a combination of all four of those things), that the idea that somebody might want to kiss me at 12pm on a Tuesday afternoon after getting some lunch in town, then walk down the street holding my hand genuinely freaked me out. Which isn’t great, is it?

My first date didn’t end up amounting to much, however, because I soon got the impression that this lad wasn’t actually interested in getting to know me; he wanted to be in a relationship, but he wasn’t too bothered about being in a relationship with someone if you get what I mean. It didn’t end with any sort of animosity, it was just clear that I didn’t want what he was going for so I politely (and swiftly) called it off.

Then I thought hey, plenty of my friends keep telling me how they’ve had a great time on dates with people they met on Hinge, so let’s stop overthinking it and go on a Hinge date. This one was definitely better – significantly less intense and we had a very lovely time – he was a few years older than me, we went for food after I finished work, and I came away from it feeling pretty good. But as much as I had a really great time, I still wasn’t sure whether I liked him in that way.

I did that internal monologue where you think ‘well, we had a nice time, we’ve got quite a lot in common, he asked questions, I asked questions, he made me feel comfortable, he openly expressed interest in me, he’s a good looking lad, there’s absolutely no reason why I shouldn’t see him again. But I wouldn’t be too fussed if he didn’t text me. If I wouldn’t be bothered though, then does that mean that I’m not attracted to him? How could I know that from spending two hours with a stranger? I didn’t feel as physically attracted to him as I’ve felt to men before. But was it just lust with the times before? Would it be healthier for me to wait and see? He was really nice…’. (Also, he’s an acrobat and that sounded like a lot of fun ygm hey heyyy)

He didn’t text me anyway though (and I didn’t text him), so all that mental energy was a little wasted lol. But to be fair, now that almost two months have passed since that date, I know that I wasn’t into him – not really – I was just trying to second guess whether I’d be sabotaging myself by calling something off with a nice man, simply because I wasn’t head over heels after two hours of conversation.

But now that I’ve told you these tales about my first dates, let’s circle back to the first couple of paragraphs of this blog and ask: what is it that you look for in a romantic partner Betty? Well, stranger, for the very first time I can confidently say that I’ve got absolutely no idea, and yet, (also) for the first time, I’m actually not that bothered. Don’t get me wrong, it’d be nice to be in a relationship with someone and I think that I’m way overdue experiencing that part of life, but I’m now in the position where I don’t want to overthink all the details and create a narrative in my head that doesn’t exist so I end up disappointed when something that was never going to happen anyway doesn’t happen. It takes up too much mental space and it forces me to feel lonely when I’ve no reason to.

Broadly speaking, I want someone who truly knows and is interested in me – intellectually, physically, emotionally – and visa versa, but I’ve got no clue of what that looks like in reality. So, I guess mystery man will just have to show me once he finally decides to show up, ey? I’m not bothered unless he’s worth it though…no pressure then.

Xx

I was a Christmas Presenter on BBC Radio 1!

I was a Christmas Presenter on BBC Radio 1!

Before my foot decided to throw one of the most dramatic tantrums I’ve ever seen and land me in the hospital, I had the absolute joy of presenting not one, but TWO live shows on BBC Radio 1, as part of the Christmas presenter takeover. But what I realise, is that for those who don’t want to be radio presenters – so, the majority of the population – it was a bit of a shock to see me graduate from Durham University in June, move to London in August, and then end up presenting on BBC Radio 1 by the end of December. So, let me explain a little of how that happened – although, even with the explanation, the fact that it happened is still pretty ludicrous, but I’ll give you the context anyway! 🙂

I’m not one of those people who has always known exactly what they wanted to do. As a child, I went through the motions of wanting to be a Disney princess one day, an architect or archaeologist the next, a singer on X-Factor some mornings, and then there was that time when I really wanted to be a waitress. Even though I can’t stand for long or walk long distances. We can put that one down to wishful thinking. More than anything, my priority was always to end up in a job that I enjoyed; I didn’t want my disability to force me into something boring, simply because it’d mean that I could sit down all the time. Even when I was at university and I was telling people that I wanted to be a translator working within the music industry, I didn’t really know that that was what I wanted to do, nor did I have any clue whether that job existed in the first place – I just thought the idea sounded pretty cool, and I guess it gave me something to say whenever a relative posed the question.

Whilst studying at Durham University, I took up student radio. I had my own show in my first year, where I sat for an hour and played my favourite songs whilst some of my mates back at college would occasionally tune in. I interviewed a few student artists and then got involved with a group of students who were trying to organise a music festival – though the festival, unfortunately, was one of the many casualties of COVID: R.I.P.

I loved having these little projects, but they definitely weren’t my priority; it was only in my second year that I started to think of maybe pursuing a career in radio. During the third (?), maybe second (?), lockdown, one of the only things that I was able to do was student radio because we could all broadcast our shows from our bedrooms. So, I took it upon myself to start emailing some of my favourite musicians and ask them whether they fancied doing a zoom interview for the radio. Naturally, I talked the station up in the hopes of getting some responses, but I didn’t expect to talk my way into interviews with musicians from across the UK, the USA, Australia, and that random lad I spoke to who’s from Sweden. (He was stunning by the way; it took me a hot minute to recover from that Facetime). And so it was these interviews, as well as my spontaneous attendance at the Student Radio Conference in April of last year, which led me to decide that I actually might give this radio presenter thing a go.

Since making that decision less than 12 months ago, I’ve worked incredibly hard to get into the radio and broadcasting industry, but if I’m honest with you, the graft really hasn’t felt like work to me. Of course, there have been moments over the past five months since I moved to London when I’ve been totally burnt out and exhausted (*cough* ended up in hospital needing an operation *cough*), but that’s been because getting into an industry like this one rarely happens overnight, so I have to work a million jobs and be in a million places all the time so I can make my rent, and also say yes to as many opportunities as possible in order to get myself where I want to be. Therefore, the part-time jobs definitely felt like work, but every time I did a shift at a radio station or made a demo, it was so much fun that I would’ve sat and done it for hours. In fact, there have been plenty of times when I’ve done exactly that.

Everything I’ve said so far has hopefully shown you that I am totally in love with this profession, but I’d be lying if I said that I don’t have to take my disability into consideration when thinking about a career. So, I can’t tell you how much of a relief it’s been to me (and probably my parents) that I’ve managed to fall in love with a job that allows me to take care of my feet, without being made to feel like I’ve compromised myself to put my disability first – especially given that the working world is so disgustingly inaccessible, that it was never inevitable that I was going to be able to get the best of both worlds like that. But hey, I managed it! (Coincidentally!)

And yet, just because I secured my place in the BBC Christmas takeover, this doesn’t mean that I’m now definitely going to be a radio presenter full-time; there’s still plenty of grafting and networking and emailing still to be done. Nonetheless, I’m very aware of how lucky I am to only be 23 and to have found a profession that I can and want to pursue, and I’d like to think that it’s only a matter of time before I get to have my name permanently on a schedule.

It can be tricky to choose the thing that you love over the simplest route; a lot of the time there’s no guarantee that it’ll work out, and there are a lot of people in this world who don’t have (or think that they don’t have) the ability to take that kind of risk. But if you have the space to try, then I’m going to go all motivational speaker now and tell you that you shouldn’t let fear stop you. I don’t know if this radio career thing is going to work out for me any time soon, or at all, but if it doesn’t, then at least I know that it wasn’t for lack of effort.

It’s the most wonderful time of the year?

It’s the most wonderful time of the year?

When I graduated from university in the summer of this year, there were so many ‘next steps’ to complete that I never felt like I took a second to sit down and think about what I want from this part of my life. I’d already spent months juggling problems with my feet and writing essays, a dissertation, completing exams, and feeling totally disenfranchised with my university environment, so once it finished, to be honest I was relieved. Instead of taking a break from planning the next thing though, I just redirected my brain to going on holiday with my friend, spending time with my family, and the logistics of moving to a city to pursue a career.

I know that my ability to be super organised, focused, and to work like an absolute pack horse often gives people the impression that I have everything figured out, and honestly, sometimes I trick myself into thinking the same thing. It’s only really been since I’ve moved into this part of my life – away from the safety and structure of family and educational institutions – that I’ve realised there are so many parts of life where I’ve got absolutely no clue.

But you know what I’m going to say here, right?…That it’s totally okay to have no idea what you’re doing! In fact, it’s part of the fun.

I’ll level with you here though, and say that ‘living in the moment’ and not fixating on the million and one things I need to do next are not ways of living that come naturally to me. I’m a hard worker, and I’m a cup-half-full kind of a gal, but I’m also potentially one of the most impatient people you’ll ever meet. As in, I can experience a huge success on Monday and by Thursday, I’m texting my friends saying that I’m bored. But this is a habit that I’m really trying to get out of, because I’ve been given enough pep talks by drunken middle-aged women in the smoking area of pubs, to know that if I keep being this way, then one day I’ll wake up with wrinkles and greying hair, wondering where half of my life went.

(Shout-out to that brand of Yorkshire woman by the way; long may you ladies bring the flavour to the night-out.)

Unfortunately, so many of us spend a hefty amount of our time getting worked up over feeling like we don’t have every aspect of our lives figured out. I’ve had countless conversations with people of all ages stressing because they think that they’re not at the point they ‘should’ be at, but what does ‘should’ even mean anyway? Who decides what each of us ‘should’ be doing? Surely, that’s just us getting lost in social conventions and comparisons, before asking ourselves what it is we want to be doing right now and whether there’s anything we need to change to get there.

Maybe what I’ve written this week doesn’t feel relatable to you right now, but this is the time of the year when we’ve got to be extra aware of how those around us are feeling. I won’t lie to you, I love Autumn into Winter, but as much as I love watching the leaves change colour and hearing firework displays in the distance, this is also the season when many of us start to feel cold, tired, and fed up. I also know that a large proportion of my readers are British, so it’s likely that you suffer from our nation’s inability to talk about these types of feelings without aggressively cringing, and I get you; this blog isn’t that deep or existential, and still, I found it difficult to write what I wanted to say. But the momentary cringing or the incoherent sentences are better than the middle-of-the-night solo breakdown. So, if you’re feeling some type of way right now, then swallow your pride and just call your friend to talk about whatever’s on your mind; you might not share everything whilst you chat, but odds are, at some point in the conversation you’ll have a laugh. And when has that not helped to calm you down or cheer you up?

I love it when you patronise me x

I love it when you patronise me x

Having a physical disability since birth has impacted my life and personality in more ways than I’d ever be able to measure, which is why it’s always been odd when people have asked me whether I’d wish my disability away if I could. Clearly, the implication here is that life with a disability is seeped in stress and depression, so people think that it’d be totally understandable for me to sit there, teary-eyed, wishing that I wasn’t a person with Spina Bifida. And don’t get me wrong, there are moments when I feel this way (after all, it doesn’t always seem fair that I have this extra sack of sh- to deal with) but life is difficult for everyone at times, and I don’t know who or what I’d be without my physical disability. This doesn’t make me proud to be disabled or particularly enthused that I am, it just means that asking whether I wish I wasn’t is a bit of a silly question.

And yet, I’ve been asked this question on more than one occasion, so obvs I’ve given some thought to whether there are aspects of my personality that stem directly from having a disability, and whether there are ones that I’d probably have anyway. For the most part, I think that many of my personality traits have probably just been amplified by living with Spina Bifida, but I will say that I don’t think that this is the case for my silliness or adventurousness. If anything, I’ve had to make an active effort to not allow the disability to crush those natural personality traits. But on the other side of things, I do believe that there are also parts of my personality that have been formed as a direct result of living with Spina Bifida. For example, I have an incredibly low tolerance for being patronised.

Everybody’s experience with a physical disability is different, but from my short life so far, I will say that being patronised by literally anyone is just part and parcel of being disabled. It happens at hospital appointments, at school, amongst friends, at pretty much any public event you go to where you ask for disability assistance, in airports, in the doorway as you try to get into a club; honestly, I’ll be here all day if I list everywhere I’ve been patronised so we’ll leave it there for now. But what I sense you’re wanting me to explain, is how exactly people have been patronising towards me, because saying that it happens to me all of the time has likely made you a little self-conscious about whether you’ve been an active or passive bystander in the treatment of the disabled by the public. Or at least, I hope that that was a little thought in your head just now.

I’m not going to lie to you, there’s a specific voice that some people use when speaking to disabled people which puts my back RIGHT up when I hear it, but it’s almost impossible for me to describe with words. I’m even getting irritated just thinking about it (lol), but basically, people talk slower and softer, as if the words coming out of their mouths might break poor, defenseless, disabled me, even though quite often, the words they’re actually saying are denying me the help or respect I just politely asked for. Then there are the moments when you’re just straight-up dismissed or ignored, but honestly, I feel like I don’t get triggered so much by those because at least I’m not being treated as if I’m so fragile that one wrong move and I might break.

Undoubtedly, I’m also patronised because I’m a young woman (no surprises from the patriarchy there), it’s just that the physical disability provides an extra opportunity for society to infantilise me. Which is fun!

Sometimes I feel like my natural tendency towards being silly and positive means that I don’t always come across as a woman who can hold her own, but the fact is that people wouldn’t respond to me well if my reaction to being patronised because of my disability, age, and/or gender was blind fury – even though sometimes that’s exactly what I feel. And I’m not saying that I experience these sorts of things on the daily, but when I do, it can take everything within me to stay calm because in the moments when I have reacted wholly honestly, nobody likes or listens to a hysterical woman. So you smile and wave, you shelve the fury, and you bite back just enough so as to stand up for yourself, without losing their attention. It’s infuriating, but it’s a skill that you have to have if you’re disabled (and female), thus, it’s not one that I’d like to wish away.

But trust me, once you’ve recognised the ‘voice’ I tried to describe before, it’s something you’ll never un-hear. So please, for gods sake, try to not be the person to use it.