Tag: disabilityawareness

You’ve heard of glass slippers…

You’ve heard of glass slippers…

by elizabethmdouglas ♥ 0 Leave a Comment

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

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

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

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

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

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

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

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

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

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

So like I said, it’s delicate.

They ain’t all bad

They ain’t all bad

by elizabethmdouglas ♥ 0 Leave a Comment

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

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

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

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

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

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

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

Don’t worry about it

Don’t worry about it

by elizabethmdouglas ♥ 0 Leave a Comment

Last week was not my favourite week. I started things off the way I usually do, posting a blog and preparing for another few days of working a silly amount of jobs in various parts of London. The blog was about how comfortable I feel with the image of my shoes, so naturally, I wear a skirt with my callipers out on the day I post it, to keep a level of consistency in my words and my actions. But to my disappointment, I go out to have a drink with my friend and notice more people obnoxiously staring at my shoes in one afternoon than in the last few weeks put together.

Now it could be that because I’d just written and posted that blog, people staring at my callipers was on my mind so I was always going to notice it more than I normally might. Regardless though, I ended up feeling pretty horrid because that degree of ignorant gawking continued everywhere I went for most of the week.

When I mention to people that my shoes get stared at, they most of the time can’t believe it; they just don’t see how my callipers warrant that sort of reaction. Which, I agree with, but I still get people walking into walls or falling off of bikes because they’re so captivated by those metal bars coming up my shins. I’ve also had some very sweet reactions where some have said that it’s not my shoes that people are staring at, it’s me. A lovely sentiment, but there’s a very clear difference when people are looking at my shoes versus me, and that’s whether we make eye contact at any point because when the disability is the focus, people rarely take notice of the person with it.

And maybe I’m an optimist, but I don’t believe that every person who obnoxiously looks at my callipers is thinking enough about what they’re doing to be vilified for it. By this, I mean that having a disability tends to come with this unspoken responsibility to explain yourself to others whenever they ask and in as much detail as they want to hear – or at least that’s how I’ve felt at points. It’s this assumption that because I look physically different to others, and have to wear a visibly strange piece of clothing, people are entitled to stare at it, ask what it is, why I wear it, and whatever other questions they might have, and I’m obliged to answer.

Up until very recently, I always adhered to this social pressure. Partly, I think, because I’m used to listing off the government and institution-friendly descriptions of my disability which reduce everything to small sentences specifying what I can’t do so that I can get a green tick that yes, she’s disabled and she does need this help. But I also prefer answering the questions – even if they do get a little intimate sometimes – because I’d rather have that conversation than watch somebody stare at my shoes from across the room. If I can talk about it, then I feel more human and less like a circus freak.

People being obnoxious and staring at my shoes will never stop. Neither will the need for me to reel off my medical history to strangers for access to buildings or services, or just for general understanding. I’ll also get a few foul comments made to me when in conversation or on the street because that’s just how people are sometimes. For the rest of my life, I’ll have weeks like this week when I cannot be arsed with having Spina Bifida and how that can make the world act towards me, but that’s not news. It doesn’t mean that people shouldn’t do and be better when it comes to the treatment and perception of disability, but I can’t change everything overnight so if I’ve got to get upset about how judged I’ve felt in an afternoon every now and then, then that’s totally fine too.

…

The other day I was walking out of the BBC to my car in one of the disabled spaces and I saw a man staring at my shoes as I came towards him. I counted the seconds it took me to walk that distance and it reached 47 seconds. 47 seconds he was staring at my shoes until I passed him so he couldn’t anymore. He didn’t look up once. But you know what? I had places to be, so leave it.

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.

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.

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.