Tag: physicaldisability

You can’t sit with me

You can’t sit with me

by elizabethmdouglas ♥ 0 Leave a Comment

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

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

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

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

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

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

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

Which is great!

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

Oh my god, I’m so embarrassed

Oh my god, I’m so embarrassed

by elizabethmdouglas ♥ 0 Leave a Comment

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

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

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

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

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

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

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

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

You don’t look like you did

You don’t look like you did

by elizabethmdouglas ♥ 1 Comment

I’ve been writing these blogs now for 4 years, and I think that throughout that time, the way I’ve approached the pages and what they’ve meant for me has constantly changed. To begin with, I didn’t think that anyone would read them and I had a level of embarrassment at the thought that someone ever would, and now that I know that a lot of people do, there have been times when I’ve felt more cautious about writing so honestly. However, these online pages have become a way for me to express myself in a raw, simplified manner, and I feel like if you read them, then you come into this expecting honesty, so whilst I might not give you every detail, I can’t help but continue to overshare.

However, lately, it’d felt like the only topics I could write about that would be of any interest to you – my anonymous reader – would have to center around either my dating life or my disability. If I wrote about anything else, I couldn’t quite settle with myself that anyone would be bothered. But (ironically), only writing about these subjects didn’t feel honest.

As far as dating goes, frankly, I’ve become tired of writing the same thing – or feeling like I am. I’ve tried different approaches when it comes to dating, I’ve had many an exciting tale to tell (and have enjoyed telling them), but ultimately those stories have ended with me staying single when I’d probably rather not be. Except, I’m not sure if that conclusion is true for me anymore. For years I’ve defined myself in some way as being the one with the chaotic love life, keeping my friends entertained, and each time it’s ended with me not in a relationship, I’ve told myself that in some way I failed. Even though every ‘thing’ I’ve had wouldn’t have worked anyway (clearly); in many of them I was more invested in the story than the person, and in some, the circumstances meant that it was simply out of my control. At no point did I fail, and I’m bored of leaning into that narrative.

Also, I’m far too confused about what I want and who I am at the minute to even go near the stress and effort of the dating world. You’ve got to grit your teeth and put up with a lot for dating in the current climate, so for now, I choose to not.

Last week I drove myself around Wales for a few days because I wanted to address the feeling of confusion that had been lingering in the back of my mind for months. For the very first time, I’d been unsure of what I was doing, why I was doing it, why I wanted to do it, and who I even was in my head. I was trying to reconcile having to speak about my disability far more often than I ever have before in order to ‘represent’, whilst still having conflicting views about my own body and how I want the world to perceive it. I also miss my family, because in the last year many of those who I’m closest to emotionally, are no longer that near physically. And although I’ve made it happen for myself, my career trajectory so far has been quick, and I’ve given myself very little time to keep up with it. But still, somehow I was confused as to why I kept waking up and feeling exhausted. So I took myself to my happy place, the middle of nowhere, where I drove for hours, sang at full pelt, breathed cleaner air, thought about nothing for stretches of time, and then tried to work out what I feel.

I concluded, that so much has changed in my life in a very short space of time that somewhere along the way I got a bit lost. I turned 24 and now there are things I used to tolerate, accept, or love that I don’t feel the same way about anymore. For example, I’ve only ever tolerated my disability: now I want to like it. I used to love to be able to tell my friends a story about some complicated romantic situation I found myself in: now I only want simple. I used to accept that if I wanted to have fun, then I would always have to be around other people to do that: now I want to find the same joy in moments when I’m by myself.

Rather than be frightened by my mid-20s confusion – as I was for a couple of months back there – I’ve decided that I just need to sit in it and see what happens. Within all the change and the rush of progressing my career, I need to get to know myself as a 24-year-old, because I no longer look or feel like I ever have before. Obviously, the core parts are still there – my eyes are still green, my hair is still curly, and my intentions are still always good – there are just a few extra, or slightly different, things that I need to figure out.

You’ve heard of glass slippers…

You’ve heard of glass slippers…

by elizabethmdouglas ♥ 0 Leave a Comment

If I tell you that I have a blister on my foot, then obviously you’re going to draw on your own experiences of the same thing in order to visualise or imagine it. But if then in the same breath, I tell you that a blister on my foot is enough to land me on crutches – or in a wheelchair back when I was at school – because the poor circulation and diminished sensation in my feet mean that it’s going to take ages to heal and is therefore vulnerable to infection, I’ve sort of showered with big words and abstract concepts, so you can’t really understand what I mean because you’ve got no direct experience of the same thing.

But so what? Why would you need to fully engage with this aspect of my disability anyway?

Well, I mean, you don’t really need to if you’re not very close to me. But then again, I’ve been left in a wheelchair or with infections because of people- including (though not limited to) friends, nurses, and security guards – hearing the word ‘blister’ and totally dismissing it as a big deal because it wouldn’t be if it was on their foot. Therefore, it’d probably help a lot of disabled people if everyone was encouraged to gain a little perspective on the delicacy and temperamentality of disability.

I effectively have a wound on my foot which I do my best every day to not fully reopen. And I use the word ‘fully’ here because this wound is never totally healed. It’s an opening in scar tissue from having three operations on the same foot to correct its positioning and improve the way I walk – I had three of the same type of operation (tendon transfers) because the first ended with a very dramatic infection, the second didn’t work, and the third kind of worked but by that point, I had no tendon left to transfer…These operations all happened in the years up until about 7. That scar tissue healed and fully closed when I was 18. Then it opened right back up again about six months later and is still open now.

Another caveat for you though, when I say that it’s ‘open’, I don’t mean some gory, bloody, oh my god that makes me feel a bit sick situation. Basically, on the side/bottom of my foot, I have these dots where the scar isn’t shut, which bleed, but are covered by a layer of hard skin – I guess, kind of like if you put a flat plate of glass on some paint. If I’m lucky, the dots are the size of a pinhead and the blood is black (therefore, not bleeding), but the dots can get bigger if pressure has been applied (i.e. by walking too much), and the blood moves through the gaps, and occasionally the blood is pushed to then form a blister. If it’s really bad, then there’s no blister at all; I just bleed from the center of the scar tissue. And it’s never fully healed because I walk on it: since that’s kind of how you use feet.

So I guess, technically, my foot is always bleeding – except for that six months when I was 18 – but it’s only a problem when that blood breaks through the glass layer of skin and reaches my sock. Under the glass, I can see it, but it’s not open and therefore vulnerable to infection; out of the glass…well, bacteria can get to it and cause some issues.

However, I can’t feel my feet; I take care of them purely by sight. I can see when a blister is about to develop, or if an infection is brewing, but the second I’m not looking, I don’t know what’s going on. This means that I look all the time, though I’ll be honest and say that sometimes I just won’t look because sometimes I don’t want to see the spiderweb of blood on the side of my foot. Instead, I’ll feel it with my hand for blisters, and if there aren’t any, I’ll spare myself the somewhat threatening image for a day.

This small part of my body is ridiculously delicate and yet it holds so much power over my life. I go to regular appointments to keep the glass layer of skin over the scar strong enough to not break, but thin enough to not cause blisters itself, and still, the weather, the condition of my footwear, and the amount of walking I do can create a crack or cause it to build up too much so that the next time I take off my shoes I’m greeted by a circle of blood on my sock. Always love that.

I could go on for hours speaking about the experiences I’ve had with this part of my body; the times when it’s caused me intense grief, frightened me, or deeply irritated me, but that’s for other blogs. What I want you to take away from these paragraphs, is (hopefully) the knowledge of why I can spontaneously end up on crutches when yesterday you saw me walking; why I can tell you that I’ve got a blood blister on my foot but walk and seem exactly the same as last week when I had ‘no problem at all’. But most of all, I want you to know that even when I don’t have a blister or an infection, that’s because I look at my foot religiously to ensure that those things don’t happen.

Life with a disability isn’t one set of simple, fixed symptoms that manifest in exactly the same way daily. I’m not stressed or upset about my foot every day because I’m used to it, and because I do a lot to make sure that it doesn’t need to cause me stress or upset every day. But if you take away or change one part of this foundation my parents and I have built my life on – like my shoes, my chiropody, or my car – then I wouldn’t be able to be everything that I am or do everything that I do.

So like I said, it’s delicate.

They ain’t all bad

They ain’t all bad

by elizabethmdouglas ♥ 0 Leave a Comment

I’ve written before about how people stare at my shoes and how the image of them can sometimes complicate my relationships with others, and though everything I’ve said on this topic so far is still valid and based on true events, I do acknowledge that sometimes, in the moment, individuals are reacting to how I’ve presented my disability rather than acting on deep-seated social preconceptions. But that was a lot of words in one sentence, so I’ll try to explain myself more clearly. Using more words…in separate sentences this time though. 🙂

Growing up, I don’t remember ever feeling hugely different from my peers. Yes, I was in a wheelchair for stretches of time because of my operations, blisters, and occasional infections, so I knew that there was a physical difference between me and the other 6-year-olds, but I don’t think that I ever had a complex about it. There were moments when I was sad because all the other girls had the Polly Pockets in their shoes, or those glittery gel heels you could get from Claire’s, and I was stuck with these leather boots, but then I was also the only kid who could wear coloured shoes to school, so you know, swings and roundabouts.

Plus, I was never bullied for my disability, so I didn’t grow up knowing what it was like for my body to be publicly ridiculed by my peers – something which is unfortunately not a given for disabled kids. So this, along with my parents’ insistence that I always felt equal to my older brothers (and thus, them all being absolute feminist icons) meant that I grew up knowing I was different, but that that wasn’t a big deal. However, then you become a teenager and later an adult, and the world isn’t quite so consistently kind…

I’ve learnt a lot about my disability in the last couple of years alone, but possibly the most important lesson has been that if I step into a social situation like I did when I was 6, thinking that my Spina Bifida is (at best) only slightly relevant to the moment, then people are unlikely to make it a big deal. My 6-year-old self wasn’t bothered about the metal bars on her boots because that’s just what she had to wear, and why would anyone want to talk about shoes now anyway? Let’s go climb that tree! (Counterproductive for the shoes and Spina Bifida, but anyways…).

I went to Prague with one of my best friends last weekend and whilst I was there I tried to channel this 6-year-old point of view. I stopped myself from giving in to the feeling of embarrassment that comes with asking strangers to adjust to my disability, and I just asked how far the club was from the bar. It might sound trivial to you, but even something as simple as asking people to give me an exact walking distance is stressful to bring up when you don’t know what response you’re going to get. I didn’t stop there though. Oh no, she took it to another level, and she wore a short dress which put the callipers on show to the club – something I was never phased about doing before university made me insecure.

I’d be lying if I said that these were easy things to do because they weren’t and frankly, they were only really achievable because I had one of my girls next to me to tell me to stop being silly and wear the damn dress. But once I started approaching the social situations like yes this is just how it is, the people around me took it in their stride as much as when I suggested we do another shot of tequila. Just like when I was 6 in my Cinderella dress walking around Asda, what I had on my feet wasn’t a big deal. Or at least, not to me or to anyone who mattered in that moment.

It’s about balance, though. I can’t be like I was when I was 6 and not care about my Spina Bifida at all because I don’t have two parents and three brothers (and the rest of my familial army) ready to pick me up when I land myself in a wheelchair from climbing trees or hiking up hills. They’re still there, but not quite as close. Plus, society is pretty rubbish in its treatment and perception of disability, and my brain is so much more switched on to that than when I was a little girl. But there is something to be said for not assuming that everyone is going to be lame about it: I went on nights out with random people in Prague, we all got drunk together, we had a great time, and if I asked to sit down for a sec to rest my legs, nobody batted an eyelid. In fact, the lads with the egos were more than happy to prove that they could piggyback me down the street. No medical records explanation was necessary.

Who are you dating? Me or my feet?

Who are you dating? Me or my feet?

by elizabethmdouglas ♥ 1 Comment

Recently, a stranger left a comment on my TikTok asking me when and how I tell people I’ve dated about my disability. At first, I saw the message and thought well that’s a great question, let me give it some proper time and attention, rather than fire my camera up right now as my housemate and I eat another snack one of us found in the reduced section. But then this is such a nuanced question for me that even after filming a 2-minute video, I don’t feel like I properly answered it. So here I am, not slumped on the sofa with a biscuit in my hand, giving it some focused thought.

I find introducing my disability to new people very complicated – for lots of reasons. Although I had to give plenty of explanations of it to friends as a teenager, I also went to the same school with the same people pretty much all the way through. Therefore, whilst they might not have known or particularly cared to know the details of how my condition can affect me, they did see me in a wheelchair at points when blisters or footwear had caused me some issues. They had also spent years growing up alongside me, so they knew me way more than just as a physically disabled person. In fact, half of the time I had to remind them of my Spina Bifida because even my closest friends would often forget that it was a thing at all.

Then I went traveling and onto university, where I experienced intense but very short friendships with people; an exercise in distilling myself and my disability into words to try to gain understanding in a very short period of time. Some individuals were amazing and I felt more listened to than I had even within my childhood friendships, and others were very dismissive. But the thing with my disability is that I put so much into maintaining the condition of my feet to ensure that I don’t have that many problems, that this can lead to it seeming like I don’t actually have many problems. Therefore, I’ve often felt that in order for people to believe that I’m not exaggerating, they need to see it get worse. But, as the one who’d have the bandage on their foot, I’d rather not go there – I’d still like to feel understood though.

So in the context of dating, it’s really tricky. I’ve definitely never opened with it because unfortunately, people have preconceptions and make very silly assumptions about disabilities in general, let alone about dating somebody with a disability. For example, one of the big assumptions is that if we’re together, the lad’s going to become my full-time carer and ultimately end up sobbing next to me when I’m in a hospital bed. Like babes, maybe ask me some questions about it first before we jump straight to a Hollywood catastrophe. But I also can’t not mention it because you have to know about it to know about me.

***I’d like to specify here that a lot of the time, individuals don’t even acknowledge that they have these preconceptions about disability; these aren’t things anyone ever says out loud, it’s just a narrative that’s knocking about society which we rarely address. I mean, some people say it out loud, but that’s just because they’re —–

Honestly, I think that I still don’t really know how to tell someone about my disability because I don’t think it can be effectively explained using words. Yes, I can give you the rundown and list off my operations, but those tales sound like catastrophe after catastrophe and don’t always feel like an accurate reflection of my life. Plus, were you actively listening when I told you? Like with anyone, you have to invest time in me to get to know me and you’re only going to understand how my Spina Bifida impacts my life if I let you see it.

Without a shadow of a doubt, in any relationship I’m in, it’ll probably come as a bit of a shock to the lad if the condition of my feet goes south because it’ll highlight just how much I do on a day-to-day basis to avoid that. However, you’d hope that if we have to go there, we’d be into each other enough for him to be more than happy to drive me to the hospital, pick up my antibiotics, and help me hop around the house until my foot heals. Just like you would if your girlfriend randomly broke her leg.

If society didn’t think of physical disabilities as life-destroying and a huge burden on people’s lives, then I wouldn’t hesitate to tell a lad about it on a date because I’m not ashamed of my body, or how I have to take care of it. But that’s not the world we live in. So I cover my shoes until I work out whether it’s relevant to the conversation because it’s not always helpful to share everything about yourself all at once. And like everyone, I’ll be able to work out after the first few dates whether you could potentially be right for me, and that’ll include whether I think you’d have an issue with being with someone disabled. I might not always be right, but I do think it’s sensible to give it at least a few hours to feel everything else out before we workshop the medical history.

Forcing myself to like this

Forcing myself to like this

by elizabethmdouglas ♥ 0 Leave a Comment

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

by elizabethmdouglas ♥ 0 Leave a Comment

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.

I wish she’d said sorry

I wish she’d said sorry

by elizabethmdouglas ♥ 0 Leave a Comment

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.

Kicking off the New Year with a BANG

Kicking off the New Year with a BANG

by elizabethmdouglas ♥ 0 Leave a Comment

I was going to write my first blog of the year about being a Christmas presenter on BBC Radio 1, but I’m currently sitting in a hospital bed with a cannula in my left arm, and a hefty bandage on my foot. So…as much as being a Christmas presenter was an absolute adrenaline rush, and proof that that’s exactly what I want to do for many years to come, let’s talk about why I’m in the hospital gown first.

I put a lot of time, energy and effort every day into not letting my disability stop me from doing whatever I want to do. I monitor my condition the way I’ve been taught how, I’m careful, but mostly, I just don’t focus on it because it’s not the only thing that I am. But an unhelpful consequence of that is that sometimes my ability to get on with it means that people forget I’m disabled at all, or they at least assume that it really can’t be that bad. (I think I even convince myself of both of those things too on occasion…) The reality though, is that the condition of my feet can turn literally overnight – as it did on Saturday.

I’d had a teeny tiny bit of bleeding from my foot on Boxing Day, for absolutely no reason, but I was due to do my first Radio 1 show that morning so I bandaged it and refused to let it ruin my day. Then it didn’t bleed anymore for the next couple of days so I forgot about it. I was exhausted from working all the time, and the excitement of my radio shows, so I got the flu on Wednesday. I went to work Saturday night, had already checked my foot before my shift – it was fine – but then throughout the shift I started to feel really sick. Like, I fully thought I was going to pass out on multiple occasions. In the back of my head, I knew that the way I was feeling was how I’d felt when I’d had quite serious infections in my foot which had spread all the way up to the top of my leg, but that didn’t make any sense because I’d checked my foot three hours ago and it hadn’t even been a little bit red. (Mostly, I was willing what I knew to be true to not be.) So, I do the 8-hour shift, feel progressively worse, get home, boom: swollen and infected foot, cry myself to sleep, A&E the next morning, get told I need an operation to remove the infection, here we are day three in the hospital with antibiotics being pumped into my arm.

I’ve had operations before – six of them to be precise – but the only thing is, I don’t really remember them. The last one I’d had before yesterday morning’s was when I was seven years old, so yes, I’ve done this before, but also not really. What’s more, is yes, I’ve been in hospitals plenty and I’m no stranger to the A&E department or an infected foot, however, that doesn’t mean that I’m not frightened every time it happens. I mean, when I saw the state of my foot after my shift on New Year’s Eve, I literally said the words ‘I’m scared’ to my empty room in between my sobs before I fell asleep.

What’s strange, is that when I was little and I had my operations, I remember nurses and doctors telling me that I was ‘so brave’ even when I had tears streaming down my face. But I can tell you right now, yesterday morning when I felt the nurse wiping my tears as the anasthetic forced me to sleep, I didn’t feel very brave at all. Quite the opposite. And I think that the main problem I have with that word, is that it seems to imply some sort of choice, when the truth is that sometimes my foot just throws me to the bottom of a black pit, then terrifies and tortures me for a while. But the worst part is always that there’s no point in fighting; I have to voluntarily give in to everything that I hate, and I feel weak and small and none of it ever seems fair.

However, this time around I’ve made a point of silencing the voice in my head which tells me that I shouldn’t make a fuss, or complain, and I’ve told people what’s going on so that they can then support me. It’s not easy to do, because I think part of me assumes that sharing this intensely vulnerable part of my life will make people forget everything else they know about me and only see my disability, or they’ll think that I’m just being attention-seeking. Nonetheless, this Spina Bifida sh*t can be truly awful sometimes, and if I have to do it on my own I’ll crumble, so it might sound obvious, but it’s been a huge relief to see that if I actually tell people what’s going on, then I’ll get all the support I need. Plus, as traumatic as it is to be the one to live through it, it’s kind of nice to show people that I’m not exagerrating when I tell them that it can get bad – first-hand experience always comes in handy when you then ask friends about walking distances on a night out, for example.

So yes, hospital has not been fun lol. But I’ve done the operation, deep breaths have been taken, Disney films have been watched and plenty of love has been felt. Now let’s just round up the whole shebang by getting the bloody cannula out and my foot all healed so I can have some fun in 2023, shall we?