One operation, two operations, three operations, four…

18th Oct 202218th Oct 2022 by elizabethmdouglas ♥ 0 Leave a Comment

If you’re an avid reader of my blogs, then it’s likely that you’ve seen me mention that I’ve had six operations because of my disability. But what’s funny, is that a lot of the time when I say these things about my lived experience with Spina Bifida, what I’m actually doing is repeating the speech I’ve always known as how to explain my disability to others – I’m not really thinking about the words I’m saying. For instance, it might surprise you to know that even though I talk about being disabled quite regularly, there are plenty of days when I almost have to remind myself that I have Spina Bifida. This is because the details of my condition and the way they physically ‘affect’ me aren’t constantly on my mind. But the times when this dissociation from my own disability gets the weirdest, is if I sit and properly think about my operations.

I had my first two operations when I was a baby and if I’m honest with you, I’m still not entirely clear on what they were for, what they were called, or how the procedures actually went. My basic understanding is that the goal was to drain some of the fluid in the lump on my back using tubes; I know they didn’t really work, and I know that I’ve still got a small plastic tube in my stomach because the doctors didn’t want to cause me any more trauma by making me have another operation to take it out. So, I’ve got a completely harmless plastic tube inside of me. Which (when I think about it) is weird, right?! But I don’t remember those operations, I just remember always knowing that that tube is inside of me because I can see the scar.

My next operation was on my right foot. My parents have told me that as a baby my feet were actually fine, and it was only when I started to walk (I think), that my right foot started to curve inwards so that I wasn’t placing the pressure where it should go and we started having some issues. Hence I had an operation to correct the positioning called a tendon transfer where they move a small piece of tendon from one side of your foot to the other to basically stretch it in a different way, so the bottom of your foot lies flat on the ground as you walk. (It’s difficult to explain in words…you might just have to google that one to get a visual aid). And again, I don’t remember being involved in the operation, but I know that I was because I can see the scars.

My final three operations were on my left foot – affectionately named by one of my best friends as the ‘attention-seeking foot’ because this little bugger has rarely stopped giving me grief since it decided to copy my right foot and curve inwards. The operations I had on this banter wagon were exactly the same as the one on my right foot, the only difference was that it took three tries (classic) because the first one got infected so you could see the bone from the outside, then the second attempt flopped, and by the third go, I had no more tendon left to transfer so it was less that the operations had ‘worked’, and more that my lovely surgeon had done the best he could. – He did kind of nail it tbf. I was in a wheelchair for 18 months during this part of my childhood.

What’s odd though, is that the time when I had these operations isn’t really something I recognise as my life because it all just sounds so medical. Obviously, I know that it happened because I’ve got scars and medical records to show for it, but I don’t ever remember thinking of myself as this regularly hospitalised child. Although, that isn’t to say that I don’t have memories of being in hospital gowns, and spending months with nurses coming to my house to dress my foot every day before I got in my wheelchair to go to school, or how the fever felt when my foot was so infected that the bone was visible. I remember all of that viscerally. But when I see the home videos of the little girl stumbling around, walking faster than her Spina Bifida feet could carry her, it’s difficult for me to watch because that level of blatantly obvious physical disability isn’t me in my head.

It goes without saying that I have my parents and my big brothers to thank for this, because if they’d ever brought attention to just how pronounced my disability was in my early childhood and restricted me according to that, then I wouldn’t be what I am. But then the funny flipside of being brought up this way, is that seeing images of little me limping around after my big brothers is bizarre and in some ways a little upsetting because oh my god, that’s me. I’ve heard all these stories about it but look! Look how much I couldn’t walk.

Still, in these same photographs, videos, and hazy memories of when my body was showing the purest form of my Spina Bifida, I couldn’t have cared less about it. This was also aided by the fact that no matter how bad my feet are, I never experience any direct pain because I don’t have any feeling in either of my feet. Therefore, infection or not, limp or not, I ran and explored as much as any other four-year-old did and the idea that I was ‘disabled’ was totally irrelevant to my experience of life. But my brain will always be wired this way, so it can get strange sometimes when I realise just how disabled I actually am.

Swipe right if you need help

10th Oct 2022 by elizabethmdouglas ♥ 0 Leave a Comment

Now, this blog is nothing if I don’t use it as a way to transcribe and elaborate on conversations I’ve had with friends, and recently, no matter who I’ve been talking to, all anyone wants to talk (or rant) about is dating apps. So, when in Rome…

Once again, we’ve found ourselves in the time of year when it’s starting to get colder, the days are shortening, and all of a sudden everyone’s hot girl summer is over and we’re all starting to feel self-conscious about our relationship status as we settle back into a work or university routine. Then, when we mix all these seasonal life changes with our reliable friend boredom, we end up sitting on the sofa watching tv one night, downloading a dating app to get some attention from a stranger. It’s a toxic tale as old as time.

Personally, I’m not a fan of dating apps. I don’t like trying to pre-empt which photographs best represent what I look like and how I am as a person, and honestly, every time I make a profile it just ends up making me feel lame because I can nEVER think of something witty to write in a bio. All of a sudden everything interesting about myself completely disappears from my brain, so I go for the less is more approach, but now I look boring. Then as the swiping commences, I get more superficial and judgemental than I would normally be as I over-analyse every photograph and bit of text I come across, looking for someone who’s done everything in their profile I couldn’t manage twenty minutes ago. Next, there’s the texting. Oh my god I hate the texting. I just can’t be bothered!!! Which is so silly because by the time I’ve made it to the texting part, we’ve both already established that we’re somewhat interested in each other, so this part should be simple. But nope, something in my brain switches and tells me that I now don’t fancy them at all because I can’t be bothered to small talk, so I probably keep the app for a couple more days until I eventually delete it again.

Although, I’ve not met a single person who loves having these dating apps, so why is it that it’s started to feel like you have to have them if you want to meet someone?

We say that we don’t want anything intense and we want meeting someone to be natural, but then we spend time on these apps which encourage us to be picky about literally everything. I mean, I aired someone the other day because he’d texted me asking me about three questions in one go and I felt like I didn’t have the time or the energy to answer. But if someone asked me those questions in person, I’d be all over it, so why did I air him just because he’d texted it?! WhERE is the logic? (The questions, by the way, were about my favourite book, where I’m from, and why I’ve moved here – all lovely questions, so I had literally no excuse to not answer them.)

When I sit and have these types of conversations with my friends, it’s funny really, because we can all identify that we’re acting in totally nonsensical ways just because we feel like we should have these apps and we should be talking to someone. But thankfully, I’m not lonely enough right now to be upset about not dating anyone, so the frustrations which come with dating apps aren’t hitting me as hard as they have before. This is partly because I’m constantly busy, but also because honestly, I – like many young people in this country – have accepted that the world of romantic relationships is a big old mess right now, and that you’ve really got to not let that get to you.

So, keep the dating apps if you want to, but make sure that you do like Marie Kondo says, and you throw them away if they’re not sparking joy.

There’s no shame if you download it again three months later though, we’ve all been there.

Quick! Someone get the stress ball!

4th Oct 2022 by elizabethmdouglas ♥ 0 Leave a Comment

As a member of the most stressed and depressed generation ever studied by science, I thought that I would take this week’s blog as an opportunity to explain how I deal with stress in my everyday life. The short answer: not very well.

Lol

Actually, to be fair, that’s not entirely true…but I don’t want to kick this off by giving you the impression that I’m always on top of my own stress levels, and that I know exactly how to regulate my feelings in order to avoid having breakdowns because I’m not and I don’t. Generally speaking, I’m what some might call a ‘stress-head’, or ‘overthinker’. I don’t deal well when I can’t be in control of situations – be they relating to work or romantic relationships, or anything in between – and I’ve been known to take on too much all at the same time, overloading myself until eventually I get burnt out, have a (minor) meltdown, then wake up the next day to do it all over again.

Knowing this about myself though, I still don’t believe that stress is an entirely negative emotion – as long as you’re self-aware enough to recognise when it’s overwhelming you. For example, ever since moving to London last month, I’ve been so stressed that I’ve lost weight and my period was ten days late. (I realise that these don’t sound like very dramatic consequences of stress, nonetheless, they are clear examples of a tangibly physical reaction to something going on in my head.) But even though pretty much every day since I’ve lived here has been punctuated by to-do lists and an endless amount of unknowns, I actually feel pretty good; I don’t feel stressed in the negative sense of the word.

Don’t get me wrong, the first week or so of living in this city was purely bad stress, but as I mentioned in a blog a few weeks ago, my parents helped me get out of that panic by urging me to take everything one thing at a time. This advice sounds so obvious, but if you’re an overthinker like me, then you’ll know that it’s far easier to think about the million and one things you need to do, or what could go wrong, all at once than it is to focus on just one thing for today. Honestly, I’m still not fully there yet, but this month has definitely been an exercise in recognising when I’m about to wind myself up, taking a breath, and then just not letting myself stress about the thing I was going to stress about.

I’m in a good position, however, given that a lot of my stress at the minute is based on things that I love. For example, finding ways to squeeze in writing blogs or going to radio stations might take a toll on my energy at a given moment, but I love doing it, so I don’t end the day feeling bitter about how tired I am. Still, even if you adore what’s making you stressed, that doesn’t mean that the mental exhaustion won’t eventually catch up with you, so it’s important that even if you feel fine, you do little things to keep an eye on yourself. I’m going to sound like one of those American yoga teachers right now, but think about the little things that you could do which could help you to focus on what you really want to do in the day. For instance, if there’s a time when my stress is going to show itself in me getting angry, then it’s going to be if I see that my room or my kitchen is unclean or untidy. So I keep my room and my kitchen neat; tidy home, tidy mind n that.

It might seem silly to talk about these things, but judging from social media, we’re way better at listing all the problems with ourselves than we are at helping each other to find some solutions. So, I’d like to reiterate that this has not been me saying ‘ooo look at me, I’m so self-aware that I never have a breakdown because of stress’, because I wouldn’t have a blog if I wasn’t an over-thinker and stress-head. But I’m trying my best to be better at not letting my mind just run, and trying is all we can do really innit.

If you are feeling a little strung-out at the minute though, top tips are: deep breath, lots of water, plenty of sleep, read a book before bed, listen to music, keep your room tidy, have a cry if you need to, and speak to someone who makes you laugh.

You’ve gotta stick to your lane

27th Sep 2022 by elizabethmdouglas ♥ 0 Leave a Comment

I’m the type of person who, in the appropriate situation, would like to look, be, or say something sexy. I’ll go on a night out, spot a wall which looks kind of cool and ask a friend to take a photograph of me in front of it, thinking ‘omg yes this’ll be a good shot’. But then the second the camera starts flashing, I can hold my face for a few seconds before I’ve got absolutely no idea what to do with myself and I end up pulling a stupid face. Orrrrrr, I’ll think I’ve nailed it until my friend hands me back the phone and my figure just hasn’t given what I’d envisioned…so all of the shots head straight to the recycling bin. But it’s not that I’m being consciously self-critical in these moments, it’s just that I don’t think that I give off ‘sexy’ vibes…

By this, I think what I mean is that I don’t see myself as demonstrating a very specific version of femininity associated with models and actresses. I’m visualising the lasses who can take the fire pictures, with the perfect bodies, in the expensive underwear, with the sultry eye contact from across the bar, and the bad bitch vibe where the men come running the second they walk into the room. And even though this expression of femininity is gorgeous, often it’s been constructed in order to make women sexually desirable to men. However, connotations of patriarchy and misogyny aside (very difficult to sweep them aside, but stick with me here), I do still want to be sexy and desirable every now and then – probably even if it comes with a hint of objectification – because in that context it’s on my own terms, but no matter my intentions I just don’t think that I give off that sultry kind of energy.

Hence I wonder, is my slight discomfort with the word a disability thing? Possibly. I mean, for centuries the (physically) disabled body has never been portrayed as sexually desirable, in fact, people have often been encouraged to think of the idea of disabled people having sex as repulsive (if it’s ever thought to happen at all). So yes, that’s probably playing a part in my inner monologue. But I don’t think that that’s the main thing going on here; I think what’s happening is that part of me is assuming that you can only really be ‘sexy’ if others describe you in that way.

We (particularly women) seem to like to categorise ourselves and our friends: at some point, we’ve all decided – actively or passively – who is the ‘cute’ one, the ‘pretty’ one, the ‘funny’ one, the ‘clever’ one, the ‘sexy’ one, and so on and so forth, as if there’s a correct way to be each one of those characteristics. These categories then cement to each of us what we are (and what we’re not), so when we’re described as a word that’s outside of our lane, we assume that a mistake’s been made i.e., I’ve never been the ‘sexy’ one in any friendship group, so that’s probably why I don’t see myself in that light.

So even though I’ve never ended a blog with a homework task, get ready! Because this week I’d like to ask that you consider whether there’s a word (or words) you’ve told yourself you could never be. Then, if you’ve thought of one, the next time you go to the place or do the thing that allows you the time to be with yourself and have a good old think, I’d like you to consider why you can’t be that thing. Finally, once you’ve (hopefully) come to the conclusion that you’re being silly and should stop putting yourself in a box, stop thinking and go do something fun; that’s enough of the internal monologue for one day. Wouldn’t want to overthink it, now would we? Or did I do that already?…

Employability first, disability later

13th Sep 2022 by elizabethmdouglas ♥ 0 Leave a Comment

Since moving to London last month, I’ve applied for part-time jobs which will allow me to have enough money to live, whilst also leaving room for me to pursue a career in radio and broadcasting. And during these job applications and subsequent interviews, I’ve been repeatedly faced with society’s favourite question about disability: how does your condition affect you on a day-to-day basis?

Everyone loves this question; it offers neat and comfortable parameters within which a disability can be defined and the methods for ‘dealing with it’ clearly laid out. Yet, every single time a person asks me this question all I ever feel like doing is laughing, because even though their intentions are probably good, the question makes literally zero sense.

On the surface, what’s being asked is how my Spina Bifida will impact my ability to work – or, if the government is the one asking, then it’s more about how it will impact general life. But the problem is that this seemingly simple question doesn’t have a simple answer, because it assumes that disability is this one fixed condition, which has these fixed symptoms, which impact everyone who has this specific disability in these fixed ways. Such an organised experience of disability would be nice – trust me – but it’s about as likely as pigs flying tomorrow morning.

Each time I apply for a job, I’ve carefully considered whether I think the role is something I can physically manage, so I don’t feel it necessary to tell the employer I’m physically disabled at that point because I’d prefer to be judged in the same ways as all the other applicants. Plus, at this stage, I don’t think that my medical history is anyone else’s business. However, when I get to an interview and the employer asks if I have any questions, that’s when I’m explicit about my needs – basically, I just need to be able to sit down regularly to relieve the pressure off of my feet for a bit. But by then, I’m 90% sure it’s wouldn’t disrupt my ability to do the job and it’s something the employer could sort out pretty easily. If the employer agrees (which, more often than not, they do) then we start filling out all the HR forms so I can be put on rotas.

This is where it can get a bit sticky because I always have to send over my medical information to prove my disability so the company can do a risk assessment, but that mountain of paperwork paints my condition as a ticking time bomb because all that’s mentioned are my operations, blisters and infections. But, as I explained to the lovely lady who recently gave me one of my jobs, the government (a.k.a. who the paperwork is written for) only cares about when the Spina Bifida has been at its worst; there’s no room in the notes for the million and one ways I take precautions every day to ensure that I’m fine.

So why is it a bit silly to ask me how my disability affects me on a day-to-day basis? Well, because I don’t know which days you mean. I could tell you the days when my foot is in a good condition, but how far are you asking me to walk? Are my shoes new? Is it hot outside? Am I walking uphill, downhill, or on a straight road? Can I drive part of the distance? Am I tired?.. Is there a correct answer to this question?

Obviously, I know that in the context of employment, companies have to cover their own backs and make sure that they’ve got the correct provisions in place to look after me. But the point I’m trying to make is that even though life with a disability can’t be explained as neatly as we might all wish it could, I still want and need to work, and ‘catering’ to the needs of disabled people in the workplace actually isn’t that hard when you listen to the person with the condition. I’ve worked all around the world in shops, and schools, as a summer camp counsellor, in radio stations and in car dealerships, and if I ever had a problem with my feet whilst employed, I communicated with my boss and I dealt with it just like everyone deals with random problems in life.

So, I don’t have an issue with employers asking a person how a disability affects their daily life, I just hope that they’re not surprised when they don’t get a simple answer. Also, I hope that there’s an acknowledgement that the person with the condition has probably put a lot of time and mental energy into deciding whether they can do the job before they even applied, and thus if they’re qualified in every other way for the role, then it’s no one else’s right to tell them what they can and can’t do.

Well that was a bit silly of me

5th Sep 2022 by elizabethmdouglas ♥ 0 Leave a Comment

Okay but, why is it that whenever I get bored, lonely, or horny (or heaven forbid a combination of all three), I think it wise to make some stupid decisions? Something happens in my head where I think that for some reason, a lad who I’m definitely not that interested in not only requires my attention, but he also deserves my stress and occasionally even my tears. I swear to you, if I had a pound for every time I’ve gotten irritated over some romantic situation, where, if I actually took a step back and thought about it, I’d decide I was really not that invested anyway, then I would be a very rich woman right now.

And I know that everyone says this but I promise you, pinky swear and lock it in, I don’t enjoy the unsaid games which happen before you’re in a relationship with someone. I can’t be bothered to wait for ages to text someone back, I don’t care about how long they take to text me back – unless it becomes clear that they’re playing the game, then that does irritate me – but more than anything, I hate how being involved in the game makes me overthink EVERYTHING. And yet, I still do it! Often with people I don’t even like that much! I’m also incredibly picky and very very rarely say yes to going on a date with someone. So am I part of my own problem? Possibly.

I think that part of it is that if you actually sit and think about the efforts a person would have to take to not think, speak about, or see romantic relationships in everyday life then you come to realise that it’s kind of impossible. Every time you turn the television on, it doesn’t matter if it’s reality tv or a drama, odds are there’s a hefty section devoted to finding a relationship, being in one, or leaving one. Then you walk down the street and someone’s being cute with their partner, or there are advertisements suggesting what you should do with your partner, or what you should buy them. Plus, you’re judged if you go out and do things on your own, let alone the lame fact that it’s kind of unsafe for a woman to fly solo in towns and cities once the sun has gone down, so even if you wanted to go for a drink on your own, there’s that little voice in your head wondering whether it’s worth the potential hassle.

Therefore, we’re encouraged to be lonely, we get bored, and if those two weren’t enough, the sex drive comes along to make us momentarily ignore that part of our brains which tells us that something is probably not a great idea. Because maybe it is a good idea for the near future. And it’s not that deep anyway! And they’re interested in me! Or they seem to be… And it’ll make for a fun story to tell everyone tomorrow morning.

I try not to waste time regretting my actions, since I know that if I were put in the situation again, I’d probs do the same thing anyway, but sometimes the embarrassment does find its way into my internal monologues and when it does, you’ve got to flush that shit away like a spider in the bath.

But second-hand embarrassment aside, at least I try to treat people the way I’d like to be treated so it’s not as if I’m out here being a massive cow when I’m making questionable decisions. However, this isn’t the part where I promise never to text someone who I know is only going to play some game and then irritate me by doing that, because ladies and gentlemen, I am silly at times. Buuuutttt, I will congratulate myself for finally being decent at knowing when enough is enough and just deleting the conversation thread. That’s some solid character progression right there. Go me.

Making London moves

29th Aug 20222nd Sep 2022 by elizabethmdouglas ♥ 0 Leave a Comment

I’ve never been a person who’s particularly scared of change, especially when that comes to living in a new place. In fact, once I finished secondary school I worked three jobs so I’d have enough money to go travelling before I started my university degree. Then when it came to moving to university, I definitely cried when saying goodbye to my parents but that’s just because they’re both so much fun to be around; I don’t think that I was actually that daunted by moving away from home. But last week, with the help of my parents, I moved all of my things to London and even though I’ve lived in a lot of new places over the past six years, this time the first couple of days in my new home didn’t fill me with excitement; all I could feel was terror.

When I’ve travelled to different countries, I’ve always only been there for a certain amount of time. Therefore, even if I was living in a massive metropolis like Seoul or New York City, I could square all the walking distances and activities in my head because I knew that once I got home I’d be able to go to the same doctor who’d been seeing me since the age of three, she could treat me, and if I had done too much walking then it’d be fine because I could stay at home and rest for a couple of weeks before I went onto the next country or back to university.

So my utter panic at now living in London was/is that this is now my every day and I don’t have an opportunity to overdo it and then rest for a few weeks if the condition of my feet does worsen, because if I get the blister then I can’t go to work and if I can’t go to work then I can’t make my rent. Not to mention the fact that I now have to rely on totally new doctors who don’t know the nature of my disability and thus, may not be able to help me in the way someone who’s seen me through all the operations and every type of blister could. Plus, I don’t have a job yet because working in the broadcasting and radio industry requires you to 1) be in the place where it all happens, 2) be able to network your way into the buildings and then 3) work from the bottom to the top, if the bosses judge that you have the ability to make it up there. So, I have to find a part-time job in order to make my bills and give me enough time to put my graft into radio and broadcasting – that part sounds easy though, doesn’t it? “Just pick up some shifts at a bar, restaurant, or cafe!” I hear you say! Only, I physically can’t be on my feet all day and the hundreds of other people also looking for part-time work can, so my chances of getting the work are slimmer and waaayyy more stressful than when living in a smaller city.

Thus, I’m not frightened of this move because I think that I can’t do it; I’ve always been a total grafter. Nor am I frightened because I’m scared to live in a new place, far away from my family. The overwhelming panic that I’m trying not to think about comes from a fear that this ridiculously inaccessible world will stop me from being everything I know I can be, just because I can’t walk far or stand for long.

But it’s not helpful for me to wallow in this fear, because if I did, then I never would’ve gone travelling or anywhere further than twenty minutes down the road. So you have to push it aside and focus on controlling what you can, rather than catastrophising all the ways the risk you’ve taken could end in disaster.

Once I’d moved a couple of things into my new room my parents asked me how I felt, and I tried my best not to let the nerves show because I didn’t want them to drive away feeling worried about me, but they, and my closest friends, all assured me that it’s totally fine to be frightened of this; being scared doesn’t make you weak or foolish. Living in this city with a physical disability is no small feat and I’m bound to have a bit of a moment every now and then, so the best thing to do is to quite literally take everything one step at a time. Then, once I know how to look after my feet in the big city, I can explore!!!

Get your kit off!

15th Aug 20222nd Sep 2022 by elizabethmdouglas ♥ 0 Leave a Comment

Last week I was sitting with one of my best friends and I asked her how often she looks at herself naked. (Bit of an intense way to start a blog, I know, but I didn’t know how else to kick this topic off lol). I asked her this because we’re all well aware of the level of scrutiny our bodies are under in regards to what size they should be, what shape, what colour, what texture, et cetera et cetera. So, I guess I was just curious about how often my friend stands in front of a mirror and has a look, to then compare it to how often I do the same, especially since the act of looking at your naked skin in broad daylight is one of the most vulnerable things you can do. After all, we might not always like what’s reflected back to us.

My friend’s a total queen though; her response was ‘all the time’ and I said the same – buuuut, I did go on to explain that I don’t spend too many seconds looking at my Spina Bifida lump or my legs in the mirror, so I’ve got room for improvement.

I think that in general, as women, we’re not encouraged to stand with ourselves and get familiar without being critical, so it can be quite unusual to see a woman who is totally comfortable with her naked body. However, I would like to clarify here that by ‘totally comfortable’, I’m not suggesting that there aren’t things you dislike, or would prefer to not look a certain way some days because we’re going for honesty here, not idealism.

One of the best things I ever did for getting comfortable with my own skin was starting to sleep naked every night. I wouldn’t say that before doing that I was ever particularly uncomfortable with my body, but sleeping naked just forces you to see and feel yourself exactly as you are: you get used to your boobs falling in every direction depending on how you’re sitting; you see all the stretch marks and ‘imperfections’ highlighted by the sun when you wake up, and you stop getting a little startled by the image of your naked body first thing in the morning. But overall, sleeping naked allows your skin to breathe and everything feels better after that.

Quick sidenote: I do realise that a lot of my words and descriptions here lean very close to the topic of masturbation, and whilst I’m not really going to go into that much today, I will say: for god’s sake, masturbate! Especially you ladies! It’s good for you! (Literally.) :)))

Many people (especially (British) women) would rather die than speak about topics such as this one, but after being lucky enough to have known women of all shapes and sizes who are so comfortable in their own bodies that they’ll take their kit off at any given opportunity, I’ve never underestimated the power of being proactive in loving your body. Every clothing campaign badgers on about it nowadays – some in a very live laugh love sort of a way (*puke*) – but the human body is truly a remarkably beautiful thing, and even though we’re never going to love ourselves entirely every single minute of every day, making sure that we at least accept ourselves every day does wonders.

Regardless of how we each feel about our own bodies though, we should be careful to never (!) shame another person for being confident in their body just because you wouldn’t do the same. I like to sit/hang around my house in a towel, or my underwear and I’ll put the bin out with ‘just’ a big t-shirt and knickers on; you not doing the same doesn’t mean you love your body any less than I love mine, but it also doesn’t leave room for my body to be sexualised or criticised when all I’m doing is watching TV or putting the recycling out. After all, if you can’t wear as much or as little as you want in your own house, then where can you?

Cover those callipers!

7th Aug 202214th Oct 2022 by elizabethmdouglas ♥ 0 Leave a Comment

I was seventeen the first time somebody complimented my shoes. I remember, I was walking up the stairs in the secondary school I’d been attending for seven years already, when a new member of staff who I didn’t recognise came in the opposite direction, took one look at my callipers, and said ‘I like your shoes’. I stopped dead on those stairs feeling a mixture of shock, outrage, and confusion because I thought that he was taking the piss and I wasn’t exactly sure how to react to a teacher being blatantly cruel to me, but then I looked at his face I realised that this compliment was genuine; it didn’t come from a place of pity and it wasn’t him trying to wind me up. So I gave him a stunned look, said ‘thank you’, and went to tell my friends about what had just happened.

It’s strange because I know that my reaction to this type of situation implies that I’m insecure about my shoes, but I think to draw that conclusion is too easy. The fact is, that I know I’m physically disabled, I know I have to wear these callipers to correct the positioning of my feet, but wearing these shoes wasn’t a choice I ever got to make; I don’t particularly like the way they look, they mess with the silhouette of my outfits, they draw people’s attention to a part of my body I’d rather not be stared at, and the sight of them can make me be treated very differently. Yet, regardless of how I feel about them, there is absolutely nothing I can do to change whether I wear them. So, it’s not that I’m insecure about my callipers and my disability, it’s that I don’t necessarily enjoy the judgements people make of me when they see them – and I can’t really fathom them looking stylish…

Now I know what many of you might be thinking: if someone judges you because of two metal bars on each of your legs then that’s just their ignorance, it shouldn’t be something which you allow to bother you. Fair point, well made. But what I’ve noticed when speaking to people about this kind of thing, and then going out and existing in the world, is that individuals have absolutely no idea of the difference in how the able-bodied world treats me when they can see my callipers, versus when they can’t.

Let’s take going to the airport for example, since I was at JFK last week. I always wear trousers which cover my shoes when I go to the airport because it’s a place where you’re guaranteed to see a lot of people, you might be tired (maybe a bit stressed), and for me, I always know I’m going to get searched because my shoes will set the metal detector off, so I don’t want my callipers to draw any more attention to me than I’m already going to get. However, this then causes me problems when I ask for disability assistance because without those metal bars, nobody can understand how I could possibly be physically disabled enough to not be able to stand in a queue for 25 minutes; people take one look at me and they assume I’m trying to unjustly weasel my way into a shortcut. So, what do I do? I wear an outfit which shows my callipers just to avoid that hassle, even though I know it’ll mean seeing loads of people staring at them when I’m in precisely the wrong mood? Why should I have to do that?

This feels like a perfect point in the discussion to use the term many of us have seen knocking about on signs next to disabled toilets since the pandemic, and preach that ‘not all disabilities are visible’. But what I find hilarious, is that my disability IS visible! It doesn’t matter what I’m wearing, you can still see the glint of the metal bars at the base of my shoes – god knows people still give any centimetre of calliper a good stare – so I’m not sure that it’s even about how much of my shoes the world can see. I think there’s a problem that people either expect to see disability as consuming the appearance of a person, or not there at all, but if you’re the former then you’re too disabled to be anything other than that, and if you’re the latter, then you’re exaggerating and you’re not disabled enough.

I sit somewhere in between both of those ideas, and it means that a lot of the time, I’ve got no idea what I am so I just do what makes the most sense to me in a given situation. I wear outfits which show my callipers whenever I want and I switch off to the staring, but in the moments when I’d rather everything else about me take precedence over the disability, then I’ll cover them up, even if that comes with expecting to get some shit off of someone at some point – it doesn’t always happen, but it’s highly likely if I’ve covered them and then have to ask someone of authority for a bit of disability assistance. Also, you probably won’t see me going on a date, or meeting new people in an outfit which shows my shoes.

But before I leave you, I want to emphasise that these acts of hiding my callipers aren’t because I’m ashamed of them – I might not actively like how they look, but shame has nothing to do with it – it’s because having a visible physical disability encourages people to focus on it for longer than you might like them to. So even though I have nothing to hide, I hide it to take control of the situation and encourage you to look at and listen to me like you would anyone else, and then you can notice the Spina Bifida later. It’s a double-edged sword though because if I now need to ask for help, if you can’t see my shoes, then you might not believe me…

Tricky, isn’t it?

Consistency is key

5th Jul 20222nd Sep 2022 by elizabethmdouglas ♥ 0 Leave a Comment

No matter how much I post about my disability on the internet, I am not, and never have been, very good at asking for help with it. I can do my own TedTalk in a room full of strangers about how ‘it impacts my life’, or overshare on the internet, but internally, I still wince from embarrassment each time I have to ask someone to alter their actions to accommodate my disability.

As a little girl, I had six operations which caused me to spend prolonged periods of time in a wheelchair and at hospital appointments, but I still don’t remember ever feeling ‘different’ because of that – shout-out to some top-tier parenting from Mr and Mrs Douglas there. Obviously, there were times when I was confused and frightened by it all; I mean, I remember the fever when an operation on my left foot got infected so the bone could be seen from the outside, I remember bawling my eyes out every time my parents told me I had to go in my wheelchair, and I still physically cringe when I think about getting stitches taken out of my feet after operations. But in and amongst all of that, I climbed as many hills as my able-bodied brother whenever we went camping, and I have no memories of feeling lesser than my peers or my siblings because I was ‘disabled’. However, I’ve come to realise that this was largely due to the fact that until I was in my mid-to-late teens, my disability wasn’t my own; it was my parents’. This Spina Bifida that everyone told me about was something I knew I had, but the dealing with it was something my parents did; like any six-year-old, I just went wherever I was told with a smile on my face and a Cinderella dress on.

Stuff started to get a bit sticky when I was a young teenager though, because by this point my friends and I were old enough to go into town on our own. So, instead of having the luxury of being lifted onto my Dad’s or my oldest brothers’ backs when the walking distances started to get a bit too far, I had to rely on my 14-year-old friends being emotionally aware enough to know the limits of my disability, even though I’ve always been too embarrassed and too stubborn to bring it up. Inevitably, this didn’t go very well and there were a lot of angry tears at the kitchen table.

Then in my late teens, I did really try to quieten my ego in favour of being responsible with my feet. But that’s indescribably difficult to do when not a single person around you is having to do the same – not to mention the fact that I’ve also got a naturally adventurous, ‘go on then!’ attitude which makes me want to do things I probs shouldn’t. So I effectively had to go through a period where I mourned the fact that I was too old to ignore my disability now; I had to grow up a bit. But thankfully, the wallowing didn’t last very long since crying over not being able to run a marathon or go on a hike for four hours wasn’t going to change anything. Plus, I can do plenty of other stuff anyway.

Sometimes I do still feel the loss though, like when I’m walking through town with my friends and they’re walking faster than me, my legs are getting tired, and I’m getting out of breath trying to keep up. Or, when another person in a Council or Security uniform tells me I can’t park here, that there aren’t any disabled spaces, and that they don’t know where I can go. Or at the thought of going on a date with someone I’ve just met, them wanting to walk around, me not being able to, and having to talk about my disability before I get to say anything else about myself.

Basically, I find asking for help with my disability humiliating and exposing, and I’ve been disappointed by a lot of people before, so it’s likely that if you do offer to help me out, even though I’ll obviously really appreciate it, it’ll take me a minute before I trust that you’re not going to forget next time. I know that that can be annoying if you’re intentions are sincere, but I can’t help it.

If you do want to be supportive of someone with a disability, I think the best piece of advice I can give you is to be as subtle and consistent with your actions as you can. I might speak very publicly about disability, but even I don’t want it to be brought up in every conversation – in fact, the best-case scenario for me if I’m out and about, is you being the one to suggest sitting down or getting an uber because you’re tired. That way, my legs are looked after and I don’t feel guilty or embarrassed for making you do something you wouldn’t normally have to.

An Indelible Friend

Author: elizabethmdouglas