Oh my god, I’m so embarrassed

12th Dec 202312th Dec 2023 by elizabethmdouglas ♥ 0 Leave a Comment

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

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

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

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

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

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

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

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

Well now I feel guilty

24th Jul 202325th Jul 2023 by elizabethmdouglas ♥ 0 Leave a Comment

The other week I posted a video on TikTok which has since received over a million views, tens of thousands of likes, and hundreds of comments – not all of them kind. In the video, I described a very wholesome encounter I’d had with a train conductor where when I’d asked him for help with finding a seat (because a spontaneous reduction of carriages on the train had made all seat reservations disappear), he’d not only sorted me out, but he did it in a way which included asking if I was comfortable with every action he took. For example, before he announced to everyone that I was disabled so please could somebody give me their seat, he asked if I was okay with him doing that first. Every part of me screamed ‘no no no no no, I hate you telling these strangers that I’m disabled’, but I needed to sit down, so I bit the inside of my cheek and I said ‘sure, that’s fine, thank you’.

A couple of the comments on this video were questioning how it makes sense for me to say that I hate bringing my disability up to strangers when I talk about it so openly on my social media and within this blog. At first glance, it might look like they’re giving me a tasty bit of hate on a random Tuesday afternoon – and that may well have been the intention – however, I do think they pose a fair question.

My relationship with my disability is complicated: it has always been complicated, and it will probably continue to be that way. I’ve told you before about how I struggle with the notion of being proud of my disability, but also how I’ve no problem with answering a stranger’s questions as long as they’ve said it in a way that doesn’t include the phrase ‘what’s wrong with you?’. I know what I am and I know that that includes Spina Bifida, and yet, I will rarely (if ever) ask a person to stand up on a bus or a train to let me sit down. I’d rather sit on the floor, or just ignore the soreness spreading in my knees as I stand. And I’ll rarely ever use the disabled toilet because I don’t see myself as requiring it. Even though sometimes that queue in a nightclub has me standing for far longer than I should.

This being said, I am learning to change my behaviour by trying to accept that there’s nothing wrong with me asking for help if I need it. Even writing that sentence, I know that people will jump straight to outrage that I even consider it a big deal at all, but I can’t explain to you how much I’ve been conditioned by the world as a young disabled woman to shut up and get on with things: to not complain, to not ask for help on the off chance that that request will leave me being dependent on others.

I’ve seen eyes roll when I’ve gently moved to the subject of changing a plan to help my feet; I’ve seen people close to me at the time try to find any excuse to do things the way they normally would had I not been there, and those moments have hurt. A trope associated with the life of a disabled person is that their medical issues cause those around them to change everything to cater to their needs; everyone close becomes a carer and the person with the disability, a burden. It’s an untrue, unfair, and immensely damaging idea that I have vehemently fought against as long as I can remember, but this has led me to feel tangible guilt for asking people to help me out on occasion.

So I can write blogs like this one and make silly videos where I talk about my Spina Bifida because your engagement with them is entirely up to you. But if I have to look someone in the eye – and they’re not my family or my closest friends – and ask them to walk slower, tell me the walking distances from this place to the next, or to please give me their seat, I feel the tears start to come and the embarrassment fills me. I know I need it to take care of myself, but I don’t want to ask you to do anything you wouldn’t normally do. It doesn’t feel fair. I don’t want it to seem like I can’t take care of myself, I don’t want you to think less of me, and I don’t want to make you feel guilted into doing something you don’t want to do. However, as another commenter said (beautifully, I’d like to add): ‘that’s not charity, that’s society’.

Away from my emotional reactions, I know that my guilt isn’t warranted, given that I don’t tend to be asking for much in these situations. So, I can’t promise you that I’ll never feel the guilt – I think part of me is just built that way – but I do try to not let it stop me from asking for help quite so often.

They ain’t all bad

4th Jul 2023 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

30th May 2023 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?

21st Mar 2023 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.

What do you mean you can’t feel it?

28th Nov 202228th Nov 2022 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

14th Nov 202220th Nov 2022 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.

Employability first, disability later

13th Sep 2022 by elizabethmdouglas ♥ 0 Leave a Comment

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

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

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

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

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

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

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

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

Making London moves

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

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

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

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

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

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

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

Cover those callipers!

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

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

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

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

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

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

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

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

Tricky, isn’t it?

An Indelible Friend

Tag: disabled