Tag: disability

You’re not really though, are you?

You’re not really though, are you?

by elizabethmdouglas ♥ 0 Leave a Comment

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

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

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

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

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

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

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

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

I wish she’d said sorry

I wish she’d said sorry

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?

What do you mean you can’t feel it?

What do you mean you can’t feel it?

by elizabethmdouglas ♥ 1 Comment

When we think about physical disability, a lot of the time many of us conjure the mental image of a severely physically disabled person who’s permanently confined to a wheelchair, miserable, and in serious need of society’s help. And if you’ve read enough of my blogs, then hopefully you’ll understand why this way of thinking is immensely damaging to literally everyone – regardless of whether you’re disabled or not. But today, the assumption about disability that I want to focus on is the one we make about the relationship between physical disability and pain.

A lot of the time, whether we’re watching an episode of DIY SOS, or Children in Need, or Me Before You, many of us assume that if a person has mild to severe physical ailments, then they’re probably in a lot of pain because of it. You hear that I’ve got Spina Bifida, you see me walking down the street wearing callipers, or getting out of a car after putting a disabled badge on display, and you figure that I probably have to take medication and I experience pain in my feet. (Obviously, you might not think about it at all, but if you are thinking about it, then this is often where the brain goes). It’s not an unfair assumption, and I’m not offended whenever people ask me whether I’m in pain, but it always makes for a fun back-and-forth when I then say that actually, one of the reasons why I develop problems is because I don’t experience any pain in my feet.

This is normally how it goes:

*at some point in the conversation the fact that I’m disabled has cropped up*

Them: So is it really painful?

Me: No, I actually don’t have much sensation below the knee on either leg. I can feel the inside, but not the outside. And I can’t move any of my toes – except my big toes, but even then, not really.

Them: Woah, that must be weird. Nice that you can’t feel if you’ve stood on something, though.

Me: Umm…hahahha…not really…If I stand on something, then I’m not gunna feel it, so I’m just gunna keep walking on it until it gets wedged further into my foot. My shoe could be filling up with blood and I’m not gunna know until I take it off. Then I’ve also got really bad circulation, so that’s going to take ages to heal. So it’d be kind of helpful for me to be able to feel it because then I’d know to not walk. But I get what you mean hahaha, it does mean I can kind of ignore it if I have a problem.

*and, scene.*

Basically, my relationship with pain in my legs is love-hate. If I had pain, then we probably could’ve avoided most of my foot problems – let alone the COUNTLESS internal monologues of stress, trying to guess whether something’s kicking off in my shoe – but obviously, I also don’t hate that someone can stand on my foot and it’s all good. Plus, it does make for hilarious stories, like how one time a guy told me he’d been playing footsie with me under the table for a literal hour and I’d had absolutely no clue…Or how every time somebody apologies profusely for standing on me, or accidentally kicking my foot, I tell them they can do it again if they want; it doesn’t bother me. Or that time that I didn’t know my friend’s house had underfloor heating until I fell over.

If there’s one thing that I’m trying to do on these online pages when I talk about disability, it’s to show you that that word is used to describe an infinite amount of variations of the human body. We use it when we deem something to have ‘gone wrong’, and in viewing it negatively, we always assume the worst. And I’m not saying that disability doesn’t come with problems – of course it does. There are disabled people who experience huge amounts of physical pain, who have to take loads of medication, or who are reliant on someone else to help them complete the most basic of tasks, but that isn’t all their lives are, nor is every assumption of what a disability is relevant to every disabled person.

But I’m not bringing this up to incite the ‘omg I hate people, why is everyone so closed-minded with their understanding of disability?’ response. Honestly, as you can see in the generalised example I gave before, I have a laugh with pretty much every person who asks me about how much pain I experience.

The fact is, society has a super problematic understanding of, and approach toward disability, but to sort that out, we’ve got to have conversations where it’s comfortable enough for somebody to get it wrong, then learn why without being humiliated or villainised for not knowing something that they have no direct experience of. As the person who’s being stereotyped, and treated a certain way because of lame assumptions, that can be difficult sometimes – understatement of the year. But you’d hope that by staying patient, and explaining it this time, the next time that that person comes across somebody with a disability, they’ll be better equipped to ask questions rather than make assumptions.

You’d hope.

I love it when you patronise me x

I love it when you patronise me x

by elizabethmdouglas ♥ 1 Comment

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

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

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

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

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

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

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

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.

Making London moves

Making London moves

by elizabethmdouglas ♥ 0 Leave a Comment

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

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

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

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

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

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

Cover those callipers!

Cover those callipers!

by elizabethmdouglas ♥ 0 Leave a Comment

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

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

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

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

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

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

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

Tricky, isn’t it?

Consistency is key

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.