Tag: physicalhealth

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.

Ch ch ch changes

Ch ch ch changes

by elizabethmdouglas ♥ 2 Comments

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

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

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

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

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

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

Loosey goosey bby, looOooOooseyy goOoseeyy.

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?

One operation, two operations, three operations, four…

One operation, two operations, three operations, four…

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.

Employability first, disability later

Employability first, disability later

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.

Consistency is key

Consistency is key

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.

So if it’s not your fault, then whose fault is it?

So if it’s not your fault, then whose fault is it?

by elizabethmdouglas ♥ 0 Leave a Comment

I had six operations as a child but I only really remember the last few, and even then the images are hazy. I remember the fever I had when my foot got infected so you could see the bone from the outside, but what I remember more is when my oldest brother (a teenager at the time) was late to meet his friends because he climbed into my tiny bed with me to watch The Road to El Dorado, as I shivered from the fever and waited to go to the hospital for another operation. I remember crying every time my parents told me I’d have to go to school in a wheelchair, but then I also remember all the laughs once I got there and my friends would run through the halls pushing me as they went. And I remember that even though I felt myself shrivel every time I had to climb into that wheelchair seat, I didn’t mind it so much when we went down a sloped pavement because my Dad would always make me laugh by letting the handles go and running alongside me.

Whenever I’d have to go to the hospital for operations (which, was not as often as it is for some children), I’d get excited because I’d be skipping school. I remember those workbooks with the ridiculously easy exercises, and I remember finishing the whole thing in about twenty minutes and then spending the rest of my time drawing or watching cartoons. I also remember fighting the anaesthetic before the operations even when I knew I wouldn’t win. Naturally, I never liked being in the hospital gowns or waking up with stitches in my feet, but I don’t have any trauma from it either. In a weird way, it was kind of an adventure.

I’ve consistently thought against sharing the more vulnerable experiences of my disability because they play too neatly into the stereotype of the weak and passive disabled life; the image of me being in a hospital bed with a cannula in my hand rather than in a Year 2 art lesson strokes society’s ego too much. Nonetheless, I’m telling you a handful of these memories now because I want you to see that even in the moments when I fit into the DIY SOS trope, I didn’t feel like this image of the poor disabled little girl. I just felt like a little girl – one who was cracking jokes all the way through because I mostly didn’t care about my Spina Bifida. (Which defo contributed to a few blisters along the way, but oh well 😀 ).

The point is that I only ever truly feel disabled when society disables me – and it’s important that able-bodied people understand that because if they don’t, then it’s easy to think that disability has nothing to do with them.

In the last few months, I’ve felt really excited about my future because I’ve been working really hard to get myself started in the radio world. But in the midst of all that, I’ve had consistent problems with my feet where they blister, then they heal, then they blister, then they heal, then they blister. The reason that this has been happening isn’t because I’ve done something I shouldn’t have, instead, it’s because the factory which makes my shoes spontaneously decided to change the lining of my insoles last year. The new lining was tougher than the old one, it caused my skin to harden quicker than normal, creating a blister which then never really healed. You’d think that this would be easily remedied by asking for the insoles to just go back to what they had been for years, but I did that, and still every new pair I’ve received has been wrong in a different way – even though my insoles require about three modifications. So at this point, I’m convinced that whoever’s making them is completely ignoring the prescription.

I understand that the pandemic and Brexit, and a general under-funding of the NHS have made it so that resources are stretched and waiting times are enormous, but these things don’t change the fact that I need the insoles and shoes to walk. I am patient, and I don’t kick up a fuss until the very last minute because society tells me that I should be grateful for whatever I receive, but what I’ve been receiving for the last six months has been making my condition worse. What I’ve been receiving is forcing me to need more from the NHS; requiring them to spend more money on production and distribution than they would normally have to, just because somebody isn’t reading my prescription correctly. I have wasted materials in my house that I can’t use but I could’ve if someone had followed the design. Who knows! I might even have somebody else’s design and now they’re suffering too because we have each others’. But I bite my lip, strap my foot up, and I don’t start any arguments down the phone about this stuff because apparently, it’s nobody’s fault. The worst part isn’t the anger though, the worst part is being at the mercy of other people and them not seeming to take that seriously – like when I asked the receptionist if there’s any way my shoes could please be posted to me without being lost in the post. She laughed and nonchalantly said yes but if they’re lost then they’re lost. She laughed and I cried.

I think it’s easier for people to sympathise with, or pity, you when you’re a young girl in a hospital gown because most people identify a level of tragedy there. It doesn’t matter that I was a happy child, who didn’t feel disabled – operations or not – what matters, is that I looked vulnerable in that wheelchair. But half of the times I was in that chair were caused by the system’s incompetency to supply me with the basic materials I need. So yes, I smiled through the not-so-fun disability moments and I had a beautifully happy childhood, but there were times that I didn’t need to be in that chair.

So as uncomfortable as it might be for people to understand, it is a fact that this society disables me far more than my Spina Bifida ever could, and I don’t want pity for that, I just want my shoes.

A day in the disabled life

A day in the disabled life

by elizabethmdouglas ♥ 0 Leave a Comment

The other week someone asked me what a normal day with my disability is like, and I laughed.

Like many, this person was looking for me to recount a complicated series of events that measure up to the stereotype of an arduous, pitiful day of living with Spina Bifida. Only, life isn’t like that, and my answer to this strangely-worded question will always be the same: it depends on the day. I will say however, that by having my first blister in 3 years a couple of weeks ago, and living more on my own than I ever have before, I’ve started to think about and recognise the number of things I do, and things I know how to do, which simply don’t go through the minds of many of my peers.

I look at my feet religiously every morning and every night: I check for tiny little differences from what it looked like the last time I looked, and I press on my scar tissue to feel if it’s weakening because god knows it can decide to weaken at any given time, for absolutely no reason. With my blister – which I thought had healed, but it hasn’t completely – I have to constantly apply this gel my doctor gave me which dehydrates the wound to constrict the blood vessels and hopefully heal the blister more quickly. Just a few days ago some old blood from when the blister had been active came out whilst I had my shoe on, and as always, I only noticed this once I took my shoe off and saw the blood on my sock. I was at my friend’s house at the time and asked her for some antiseptic, she said she didn’t have any, I made her laugh by saying ‘that’s privilege’, and then I asked her to boil some water and put some salt in it because I know that that’s the next best thing to sanitise a wound. Then amongst all of the practical things I do, at the minute I’m having to weigh up which social events I can go to, whilst also factoring in the amount of walking I’ll need to do for lectures, whilst also wanting to continue to have fun with my friends like I was before my foot decided to be a dick.

And regardless of whether I have a problem or not, there are always days when I put my shoes on and my legs feel weak: I’m tired, I trip more often, I’m self-conscious of the possibly exacerbated limp to my walk. If the pair of shoes I’m wearing are new, I can tell that all of the structure is in the right place because as I walk my feet try their very best to revert back to their naturally deformed position, but the hard leather pushes them to where they should be, making walking both easier and stiffer than before.

I know how to make a perfectly flat bandage for any tricky angle or curve on my feet, and how to spot it when an infection is tracking towards my ankle. I could tell you exactly the type of medication I need if I get an infection, and I could tell you a million tales of when I’ve had to take it. In recent years, I’ve learnt that Spina Bifida also means that I can occasionally experience bladder retention when I’ve had too much to drink, meaning that I temporarily lose the ability to empty my bladder on my own and I have to catheterise myself before the pain starts and I have to go to A&E. It’s not a nice thing to have to do, and it hurts the next day.

Knowing all of these things (and more) is second nature to me because I have to know them, and I’ve always been taught to acknowledge that it could be so much worse. But by just getting on with it, I’m not sure that I ever take the time to consider how tiring it can be to have all of this in my head and nobody to acknowledge that I’m having to think about it.

When I was a little girl, I didn’t know what was going on. I didn’t know or care that I walked funny or that my feet were different to everyone else’s. I started to clock it when I was having operations; when there were times that nurses came to the house every day to dress my foot, and I missed out on things my friends could do because I was in a wheelchair. Then I became a teenager, and I got angry about it, or I ignored it, and I didn’t look after my feet the way I could’ve. Now we’re here, I’m an adult, and I know how to do it better than anyone else. But the one thing – my biggest crutch – that I don’t have as much as I did when I was younger, is the ability to just look at my parents when I’m weary from it all and see that they know. So I miss that look sometimes.

I had an extremely happy childhood, a wonderful adolescence, and so far so good when it comes to adulthood. But every now and then I step away from the monotony of everything I know I have to do, to realise that Jesus Christ it’s a lot. It could be worse, and everyone has things they cope with in life, however, that doesn’t mean that I won’t have moments when I’m a little tired by it.

Thus, I’m afraid that I don’t have a neat or interesting ‘day in the life’ for you because that’s not how this disability thing works. Or how anyone’s life works for that matter. And let me clarify that I didn’t type this searching for pity, or for a little moan. In my head, I think that by writing this down and publishing it I’m trying to give myself that look of acknowledgement that I can only get from my parents because no matter how they try, my friends here can’t do it yet. They’ve simply not known me long enough. And away from all of the clumsy self-psychoanalysis, this blog is another attempt to show you as much of my disability as I can communicate through words.

So there you go, now you know that if you’ve ever got a nasty cut or blister that needs nursing then I’m your girl. I’ve got the personal first aid kit of your dreams mate.

Safety in numbers

Safety in numbers

by elizabethmdouglas ♥ 0 Leave a Comment

Recently I’ve been thinking about how when we move to University, there’s this weird societal assumption that we’re all going to fit right in and find ‘our people’ as soon as we walk through the door. And whilst that can sometimes be true, it rarely is.

I was super fortunate to meet most of my friendship group within the first week. But I can’t say that we were all nearly as close last year as we are now, nor can I say that I felt 100% myself whenever I was around them. Clearly, this is because it takes time for people to relax enough to properly get to know one another away from the excitement of having just met.

So now I really appreciate how stable I feel in the friendships I started last year. Obviously, we still don’t know everything about each other, but I’m definitely expending a lot less energy trying to explain why I am the way I am to everyone this year. And that’s a huge relief.

But an even more liberating part of this term has been the stability of the relationships I have with the young women around me. Especially seeing as finding friendships with girls where you feel completely safe to speak about anything – without judgement – isn’t that easy. From my experience, some of the cruellest effects of our patriarchal society show themselves in women attacking each other.

As unfortunate as it is, feeling safe and free from judgement when around your female peers can sometimes become a matter of safety. I don’t like to catastrophise or to assume the worst, but it’s a dark reality that at least one of my female friends and I are likely to experience sexual abuse or harassment at some point in our lives – if someone hasn’t already. Not to mention the general discrimination we’re all going to experience pretty much every day. Therefore feeling secure in our relationships with each other often determines whether we’ll ever have the confidence to talk about this abuse or not.

On a more positive note, these close female friendships also afford young women the space to be completely themselves. They create room for us to discover and experiment with who we want to be; making mistakes without having to fear that those mistakes will be used against us in the future.

So if it’s taken you a year (or longer) to feel settled into the University/adult life, then know that there’s no shame in being a part of this club. And if you’re female, remember that women aren’t your enemies. Don’t support this f*cked-up patriarchy we live in by tearing each other down when society gives us enough grief already. As this week’s title states: there’s safety in numbers.