City living hurts my head

20th Jun 2023 by elizabethmdouglas ♥ 0 Leave a Comment

Since I moved to London last August I’ve had to adjust to lots of things. At first, the most pressing life problem was being able to financially support myself in one of the most expensive cities in the world, whilst also leaving myself enough time in between jobs to pursue the career which brought me here in the first place. Not easy to do. Then I had the added pressure of moving all my hospitals down here and making sure that I could receive the treatment I need even though none of the doctors here knew me. Again, not ideal and I’m still waiting for the pair of shoes I ordered back in October. But I want to give the disability talk a rest today – imagine ! – and chat about what’s going on in my brain instead.

Something I’ve realised about myself as I’ve become total self-sufficient is that I have a tendency to want to run away from things when I get overwhelmed. I’ll pack a million things into my days, tell myself I can handle it, struggle with the concept of being bored, eventually crash, and then feel this desperate need for space and quiet. So in those moments I get in my car and I run to the seaside, or to a secluded lake or field, or to my parents’ living room; all places where I feel like I can be truly quiet and not allow my brain to run at a hundred miles an hour. Just for a minute.

A couple of months ago, I was getting to that point again after my most recent stint of hard graft, and I met up with a friend who I hadn’t seen in years. We sat and summarised our lives since the last time we’d spoken – not a simple feat when you’ve had whole university degrees and countless life changes since your last chat, but we gave it a go. Once we got onto asking each other how we’d both found moving to the capital, my friend managed to capture exactly how I was feeling in a way that I just hadn’t been able to for months. I’d told her that sometimes I feel so claustrophobic in this massive city, that even having to go at 20 miles per hour everywhere can make me feel like I can’t breathe and I don’t know why; it’s not like there aren’t a million places or go or people to see all the time. At which point she came back with, ‘it’s because there’s no horizon anywhere’. And for me, that simple sentence managed to summarise everything I’d been feeling so beautifully.

She’s going to love that blog feature as well, so happy Tuesday to you mate.

This idea that every day I go to work or out to meet friends or just to wander around, but there’s no end to the city skyline everywhere I look leaves me feeling like I’m boxed in. It’s wonderful and vibrant, and there’s always so much going on, but there’s no space, so the northern country girl in me ends up feeling periodically trapped in a corner by the constant light and sound. Thus I wake up some days and all I want to do is look at something expansive like a field or the sea, or drive at 60 miles per hour on a road to feel like I’m actually going somewhere.

Don’t get me wrong, I love everything that the city has to offer as far as opportunity and creativity are concerned, but most people here work themselves to the bone, so that, mixed with the constant sensory stimulation, tires (!) me (!) out every now and then. In my core, I’ll always be the Yorkshire gal, and with that comes the love for a field. Somewhere quiet where all you can hear are the sheep and the river. In those spaces I breathe better and I don’t feel quite so tense. But the radio stations aren’t in the fields and I’ve got things to do, so if keeping a life in the city means that I’ve got to run away for a bit every month or so then so be it. There are worse coping mechanisms to have.

Who are you dating? Me or my feet?

14th Jun 202314th Jun 2023 by elizabethmdouglas ♥ 1 Comment

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

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

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

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

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

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

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

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

Trust me, I know how tedious I can be

6th Jun 2023 by elizabethmdouglas ♥ 0 Leave a Comment

The other week I was talking to my housemates in our kitchen about some silly romantic situation I’d gotten myself into, asking them for advice, and then in a lull in the conversation, I said ‘if you’re ever listening to me tell my tales, and you start thinking that I’m tedious, just know that I’m fully aware that I am’.

We laughed.

For all my confidence in myself and security in many aspects of my personality, I know that I can really over-egg a point. I can talk for England once you’ve got me going and even though I try my very utmost to ensure that everything I say is of interest to the listener, I acknowledge that sometimes my energy levels can be too much even for some of the people closest to me. I try to monitor it and often I think that I give myself a much harder time about it than necessary, because I know that a lot of those close to me would describe me as a good listener as well as a good talker. But one thing I’ll always appreciate about my closest friends is that they know that sometimes I just need to go off on a monologue because if I don’t say my thoughts out loud, then they’ll spiral in my head and it’ll end in tears. Ugly tears.

But I don’t ever want to feel like a burden to other people – physically or emotionally – so in those moments when I do just feel like emotionally puking, I need to know that the person I speak to won’t judge me for it.

The type of ‘tedious’ monologues I’m talking about here is when you need to workshop your stresses about work, your PMS-induced intrusive thoughts, your anxiety about thinking you’re starting to like someone and not knowing how to play it, or when you just want to sit and reminisce about that time when you were 16 and your science lesson was hilarious. Basically, the times when you’re bored of sitting in your own mind, hearing your thoughts whizz around, and you need a human connection without conditions. However, trusting someone with this very personal and vulnerable part of yourself takes a lot because you can never really tell if they’re going to think less of you for showing them it.

For example, most of the people in my life who I’m closest to now are, and have always been, very different from me; bar maybe three, they’re all introverts who’d much prefer sitting on their own reading a book than having to engage in conversation with anyone. So I know that my (occasionally) highly strung expression of emotion can be exhausting for them and there have been times when I’ve felt guilty for that part of myself. But I do believe that supposedly ‘negative’ aspects of someone’s personality can have positive implications and my tendency to sometimes get myself overly worked up about things only happens because I care so deeply. Therefore, my most trusted friends and family members have never made me feel like I can’t open up to them when I need to – even though they miiiight have sometimes preferred the conversation to last 20 minutes less.

Then again, perhaps that last bit of the sentence was unnecessary self-deprecation. Knowing my lot, if they read this then I’m about to get some messages in capslock telling me to never think like that, because if I’ve gotta talk then they’re there to listen. I’d do the same for them, only everyone’s preferred type of support isn’t the same, so whilst my therapy is nattering, I know that some of my closest friends might just need me to sit next to them and be silly whilst we watch a movie. Regardless of the actions though, it’s about showing up for people in the way that they need and making it very clear that this is a no ! judgement ! zone ! because nobody should feel ashamed of venting when they need to vent.

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.

Forcing myself to like this

23rd May 2023 by elizabethmdouglas ♥ 0 Leave a Comment

Something I get asked a lot when I speak about my disability is whether I’m proud to have it, and if you’ve read more than one of these blogs then you may already know that that is a bit of a complicated question for me. My immediate reaction is to say ‘no’ because I’m not so much proud of the disability itself – given that the Spina Bifida in isolation contributes to 80% of the stresses in my life – though I am probably proud of how I deal with it. But even then, I don’t really know that that’s anything to be actively proud of because I can’t be or live any other way. Maybe you judge that as me thinking too far into it, but I just don’t see these well-intentioned attempts by able-bodied people to understand what it’s like to have a disability as leading to one-sentence responses.

And one aspect of my opinion of my disability which will definitely throw people – especially given how I present myself on social media – is the way I feel about how my shoes look. If you watch my videos then you may assume that I don’t really care about people seeing my shoes, but the reality is that by doing these videos and showing my callipers at the end of them, that’s me making an active effort to like how they, and my legs in them, look. Acceptance of their image when I’m wearing my shoes definitely doesn’t come naturally to me.

I think what’s at the heart of that is that I’ve never considered myself as disabled by my body – unless I’m in a hospital gown, putting a bandage on, or in a wheelchair, and even in those moments the extent of my disability has always caught me off guard which is what makes the experience so traumatic. That probably sounds quite strange, though. That I have times when I pull my car into a disabled space, put the handbrake up, and sit there thinking ‘lol it’s kinda weird that I’m actually disabled’ as I put my blue badge on my dashboard.

Maybe it’s because I don’t have any pain and because my disability doesn’t affect my mind or my appearance unless I look down, that I’ve always been so good at ignoring it – a lot of times to my own detriment but hey, we do what we can. So it’s only when I’m confronted by my reflection in a shop window or in videos and photographs that I actually see my disabled body. And I’ll be honest, I don’t like it. What I see is all the minute details of my Spina Bifida: my left foot curving inwards because the operations never quite worked, a slight limp as I move, and the unusual (kinda jarring) shape of my metal callipers against my legs. So, for a very long time, I just didn’t look because I didn’t want to know – still now, even after all these Instagram and TikTok videos, you’ll probably see me bow my head if I have to walk toward a full-length mirror or a shop window and I still ask my mum to take the photograph from the waist up.

I’m getting better though! I don’t actually flinch if I see myself walking in videos or a reflection anymore – I’d still probably rather not see it, but it doesn’t sting my self-esteem quite so much now.

My parents can get very frustrated with me when I’ve brought this kind of thing up because it hurts them that there’s a part of myself that I’m still struggling to accept; I remember my mum saying to me once (through love and irritation) that there’s nothing wrong with my callipers making me look disabled because I am, and will always be disabled, so that’s just what I look like. And she’s right. But society says that that’s bad, that’s ugly, that’s pitiful, so no matter how right my mum is, it’s an active effort to agree with her every day of the week – especially when you’re sitting on the tube waiting for the person across from you to look up and see that there’s a human attached to the shoes they’ve been staring at for 4 minutes.

So yes I know that there’s absolutely nothing wrong with the look of my callipers – with some outfits I’ve even realised that they look quite cool, those comments from people weren’t based on pity in the end – and I would never ever ever (!) say that there’s anything wrong with looking like you are disabled, but we say things to ourselves that we wouldn’t dare say to others, so even that isn’t quite so black and white if it’s applied to your view of yourself.

Nonetheless, I’m doing my best to accept that part of myself without conditions, and my best is all I can ever give.

I just don’t feel good enough

16th May 2023 by elizabethmdouglas ♥ 0 Leave a Comment

One of the first things that they tell you when you say you want to be a radio presenter is that when the microphone light turns red, you just need to relax and be entirely yourself. Just be yourself! Except, after three years at university, I wasn’t exactly sure how to do that anymore.

I know that the trope for going to university is that you ‘find’ yourself, come out of your shell, and settle into the person that you’re going to be for most of your 20s. But whenever people have asked me how I found my degree, I tend to come back to them with a conflicted answer: on one hand, I insist that I had some really good times with some fabulous people because that’s true and I hate being negative, but frankly, overall my time at university left me with a tendency to retreat into my insecurities.

I want to say that it happened all of a sudden, but I didn’t wake up one morning and decide that I was going to wear outfits to cover my callipers, start to speak less in social situations, or suddenly feel the need for constant validation from my friends; it was a much more gradual process of feeling like I wasn’t enough for the people and situations I found myself surrounded by.

In some cases, it was specific things that individuals did which made me feel this way – both intentionally and unintentionally – but it was more the general vibe that didn’t suit me. For example, I went to a very normal state school in Bradford, but an aspect of that school that I’d never considered as being integral to how I thought about myself, was that it shared its premises and resources with a special needs school. So every day my fellow students and I walked past, spoke to, and sometimes shared classrooms with severely disabled children and therefore, became accustomed to seeing disability. Consequently, I might’ve had my shoes stared at every day, but subconsciously I didn’t feel unusual because I was never the only disabled kid around. I never thought about the importance of this at the time, but then when I went to a university where I struggled to access disabled parking spaces outside of the colleges or faculties, and where I only remember ever seeing two other visibly disabled students, the impact of that mixed secondary school environment on disabled and able-bodied people alike became startling.

Another area where I didn’t feel like I was enough was in my romantic relationship attempts and sometimes my friendships. To be honest, the theme of my romantic relationships has always been that either I’m not interested when they are or they’re not when I am, they’re in a relationship with someone else already and are just putting loads of tedium or confusion on me, or doing the classically non-committal ‘I like you, but let’s just sleep together’ thing – or we met on holiday and thus continuing anything is pointless. I have been known to shoot myself in the foot by prolonging pointless situations because of boredom or stubbornness as well. So a great combo all around then! But the not thinking I was enough for lads was definitely at its height at university; I knew I didn’t feel good about it, but I hadn’t realised the extent of the toll on my self-esteem until I went to a radio placement 15 minutes up the road in Newcastle and I was surprised to experience someone openly and unapologetically flirting with me. I remember walking away from that situation thinking ‘wow, I’m not actually unattractive then’.

But of all the types of insecurity I’ve felt in the last few years, it was the insecurity in friendships that cut me the deepest.

Honestly, it’s taken me months to come to terms with how beaten down I felt at university and how that had made me into someone who rarely ever felt secure in their relationships with anyone. I’ve always been a person who cares about others very deeply and intensely, I’m reliable and I try my best to be everything those close to me need. But no matter how hard you try, you can’t be everything all at once and it can be difficult to deal with the times when you fall short of that standard you’ve set for yourself. So there were many times over the last few years when I didn’t know what I was doing wrong or why I wasn’t enough for my friends, and this just pushed me further into myself.

Unfortunately, feeling like you’re not good enough is something all of us will experience at more than one point in our lives, no matter how hard we hit the self-care routines, and so the best treatment appears to be recognising when the nasty voice in your head is becoming way louder than it ever was before and doing things to shut it up again. Don’t get me wrong, I’m no guru when it comes to this kind of thing, but I think that I knew that my radgy internal voice had become too loud when I went travelling with one of my best friends and thanked her for being so considerate about my feet. She looked at me, surprised and offended that those words had even come out of my mouth, but it was a clear example of how I’d begun to feel like I had to apologise for everything that I am to try and appease my environment. Something you should never feel the need to do.

Since then, I graduated, so obviously I removed myself from the situation physically but it’s been more about rewiring my brain to trust my instincts, stop overthinking everything going on around me, and actively practise confidence again. And now, with the very normal occasional few blips of insecurity, I’m glad to say that I feel more myself than I have for years. I still have wonderful friends from university, and I wouldn’t want you to think that I never had any great times whilst I was there because that just wouldn’t be true, but I didn’t lose any sleep about my degree ending, put it that way.

You might think that that’s a shame and I suppose that it is, but sometimes life just doesn’t go the way you expect it to. That doesn’t make the change a failure or lack, it just is what it is. There’s plenty of fun still to be had in environments that won’t make me feel quite so self-conscious 80% of the time. And that sounds like a much stronger vibe to me.

I won’t be told

9th May 2023 by elizabethmdouglas ♥ 0 Leave a Comment

When I was nearing the end of my school years and it was reaching the point where I had to decide what I was going to do after my A-Levels, I quickly came to the conclusion that I wanted to take a break from education and go see some of the world on my own.

As children, my brothers and I were always encouraged to learn as much as we could about societies – historical and contemporary – and to take every opportunity to explore, so the idea of travel was never particularly daunting to any of us I don’t think. When I told my parents that I wanted to do the whole solo travel gap year thing, they were hugely supportive, but my Spina Bifida did mean that the prospect of me traveling to, and knocking about on my own in a different country was a little more complicated than when my older brother did it a couple of years before me.

I started working and saving for my travels when I was 16, and as soon as I left school, I was working three jobs to fund all of my trips because I wanted the year before university to be entirely my own, and I didn’t want my parents to feel any pressure to financially support me through it when they had their own bills to pay, or their own holiday to save up for. More than this though, I wanted to show myself that I could look after my disability no matter where I was in the world, or what I was doing. I’d fought against it for years and had subsequently landed myself in a wheelchair for periods of time, so in my mid-teens, I’d had this niggling feeling that maybe I was going to have to limit myself because of my Spina Bifida after all. Maybe, everything my parents and family had taught me about me being able to do whatever I wanted to didn’t matter, because maybe that kind of thinking just wasn’t practical if you wear callipers.

But I’m nothing if not stubborn, so I put the niggling feeling to the test by sending myself off to four different countries on my own. And do you know what, we not only managed it, we THRIVED. I lived in the jungle, hours away from any hospital; in the middle of a bustling city where all the signs are written in a script completely different from my native tongue; in a tent on a tiny private island surrounded by the Pacific Ocean where I washed my dishes in the sea, and I worked 17-hour days in the mountains where I was, in fact, constantly on my feet.

Since then, I’ve continued to travel on my own to new and beautiful places when I can – most recently, going to visit my parents in Rio de Janeiro. But what I want to emphasise is that when I take these trips, I do somewhat risk the condition of my feet. Before I went on my gap year, I remember the face of the doctor who’d seen me through three operations and more blisters and infections than I’d ever care to count, and it was one of total support because she knows who I am aside from my disability and that I was going to do it, but it was also one of ‘oh my god, this could end really badly’. And to be frank, there were moments during those trips that it wasn’t looking great. I mean, in South Korea, I was sending photographs of my feet to this doctor at home asking if I had an infection, then sitting in A&E in Seoul, communicating the nuances of my disability to a (very lovely) doctor using my amateur Korean language abilities. (It’s one thing to know how to ask for two glasses of wine and two bowls of bibimbap, and entirely another to explain diminished sensation from the knee down on both legs and scars from multiple tendon transfers…). But we managed it, I didn’t have an infection, and I was fine. Then when I was in Ukraine, I ended up crying in my room one day because I couldn’t work; my skin was looking like it was about to get a blister because I’d been working like crazy without my normal medical treatment in 30-degree heat for two months. Not a shock, but infuriating nonetheless. My colleagues (friends) told me to calm down, and one of the lads carried me to the evening activity on his back to save me from walking for the evening. Again, I managed it, and I was fine.

If you read my medical notes and the long lists of all the times my disability has kicked off, then you would probably think that I should stay off of my feet as much as possible. That there are so many things I can’t or shouldn’t do. So many places that I can’t or shouldn’t go. You’d think that the second I leave my car in England and get on a plane to a country where I’m going to have to walk far more than I ever would normally, I’m making the odds of me ending up in hospital with a cannula in my arm far more likely than if I was to just stay at home, sit on my backside, and go work in a call centre or behind a desk forever. And you’d be correct. But I won’t be told.

The words on those pieces of paper define my disability according to its worst moments, but my life is not that. I’m not that. At least, not all of the time. Sometimes I am in hospital with an infection – I was at the start of this year – except those moments don’t happen very often and nothing terrible has ever happened to my feet whilst I’ve been travelling because I am careful. It’s not just about putting all the practical things in place to take care of my feet whilst I travel though, it’s about sincerely believing that I can do it – regardless of what my medical notes say. Yes, my stubbornness has me taking flucloxacillin sometimes because I’ve walked too much and given myself a blister that has gotten infected, but it also sent me to the other side of the world when I was 19.

I am not stupid, I do my best to take care of my disability, but I was never good with someone telling me that I can’t or I shouldn’t just because I have Spina Bifida. So, I’m cool with never running a marathon but just because I can’t do one thing doesn’t mean that every other human experience is completely inaccessible. I just might have to consider a few extra things.

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.

I wish she’d said sorry

12th Mar 202314th Mar 2023 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.

I’m not normally this irritable…

28th Feb 2023 by elizabethmdouglas ♥ 0 Leave a Comment

It’s been a running joke in my life for the past six months that I’m the fool who’s working four jobs so I can afford to 1) live in this city, 2) enjoy living in this city, and 3) pursue the career I actually want to do. Obviously, I didn’t move down here expecting to be working in so many different places all of the time, but it became clear to me very quickly that that’s not entirely unusual for people who choose to live in London. I’d be coming in to work as a receptionist in a restaurant, saying I feel stressed out of my mind because I just finished a shift at a different job, only to have a pretty surprising amount of colleagues completely relate because they’d just done the same thing. And if they hadn’t already worked for hours in a different place, they were set to work double in the restaurant.

So, if you don’t have a cushty job with a big salary, or the safety net of inherited wealth, living in London is no easy task. Although, it does seem like even if you do have those things, the culture in this city is to work work work until your body and your mind can’t take it anymore…

Personally, I’ve no problem with grafting for what I want because my ambition and my stubbornness lead me to believe that if I work really hard for it, then I’ll get there; the jury is still out as to whether I’m deluded about that, but we’re doing well so far. However, the amount of work I was doing in the first few months of living in London ended with me having to spend five days in the hospital and feeling pretty highly strung most of the time. But I only acknowledged the extent of this after I’d been away from work for three weeks because of my operation, and I returned to my workplaces.

Needless to say, I love it every time I’m working at a radio station. Yes, I’m often behind the screen and helping with aspects of the production of shows but like most things in this country, the opportunity for progression in London and the ability to meet people you’d just never come across anywhere else makes every shift more exciting than the last. It’s a cliche, but you really have no idea of who you’re going to bump into in the lift, and how that can affect your life. Therefore, every radio shift I do reminds me that I’m exactly where I need to be for what I want to do, and it recharges me for when I then have to go to my other jobs.

At this point though, I don’t want it to seem like I’m showing up at my part-time jobs and hating my life for every second I’m there, because that’s not true. I sincerely love the people I work with and I’ve gained so much from now having experience in the service industry – in fact, I think that everyone should have a service industry job at some point in their lives, just to try and reduce the amount of heat we receive from customers because my GOD people can be awful. Regardless of the laughs I have with my colleagues though, working a silly amount of hours a week in a silly amount of places and being confronted by the public’s lack of manners and ignorance, started to regularly show me parts of my personality that I’m not a huge fan of. Most notably, the fact that I can be a bit of a passive-aggressive b*tch if my patience is tried.

Lol.

I know that my reflex is always to be a nice, open, smiley person, but I’m human and if you have (literally) hundreds of people in one day asking you the same thing; lots of them shouting at you because the environment is loud, and a pretty significant amount just being outright rude towards you, whilst you’re already running on fumes because you’ve worked non-stop for 6,7,8 days in a row, then you might start to answer people’s questions a little passive-aggressively. Or you might walk into the next job and have to stare at the ceiling in the toilets, trying not to cry, after your other boss asked you to work a few extra hours. It’s not surprising that I started to react to situations in this way, but the confrontation and the negativity aren’t me, so there came a point where I had to get rid of one job before those previously small parts of my personality grew into something more solid. And thus, I handed in my resignation for one of the part-time jobs. I’m sad to be leaving my colleagues, but I’ve secured enough radio shifts now to make up the money and I’m looking forward to feeling less irritated by the public.

Without a doubt, it’s a luxury to be able to leave a job the second you see that it’s making you into a person you don’t want to be, and I don’t want to publish this blog without acknowledging that. However, I’ve too often seen people in this country stay in a situation that they truly hate just because they think that it’s less hassle to stay. This goes back to what I was saying last week about change though, in that it’s based on the assumption that if you make a change then everything will be worse, but if it’s really so bad now then wouldn’t it be nice to try and find something better? Again, I know that not everyone is in the financial or circumstantial position to just up and leave their job because they hate it, but hating your job (and low-key hating your life) shouldn’t be as universally accepted as it seems to be in this country. It’s not always easy to do, but we do need to get better at prioritising our own happiness because this working-until-you-croak thing is no way to live.

So if you really and truly hate your job, then see if there’s anything you can do about that, because we spend an awful lot of time in the workplace and it’d be a shame for that time to be saturated in negativity.

An Indelible Friend

Author: elizabethmdouglas