Tag: spinabifida

Oh my god, I’m so embarrassed

Oh my god, I’m so embarrassed

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

Well now I feel guilty

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.

Forcing myself to like this

Forcing myself to like this

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 won’t be told

I won’t be told

by elizabethmdouglas ♥ 0 Leave a Comment

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

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

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

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

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

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

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

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

Kicking off the New Year with a BANG

Kicking off the New Year with a BANG

by elizabethmdouglas ♥ 0 Leave a Comment

I was going to write my first blog of the year about being a Christmas presenter on BBC Radio 1, but I’m currently sitting in a hospital bed with a cannula in my left arm, and a hefty bandage on my foot. So…as much as being a Christmas presenter was an absolute adrenaline rush, and proof that that’s exactly what I want to do for many years to come, let’s talk about why I’m in the hospital gown first.

I put a lot of time, energy and effort every day into not letting my disability stop me from doing whatever I want to do. I monitor my condition the way I’ve been taught how, I’m careful, but mostly, I just don’t focus on it because it’s not the only thing that I am. But an unhelpful consequence of that is that sometimes my ability to get on with it means that people forget I’m disabled at all, or they at least assume that it really can’t be that bad. (I think I even convince myself of both of those things too on occasion…) The reality though, is that the condition of my feet can turn literally overnight – as it did on Saturday.

I’d had a teeny tiny bit of bleeding from my foot on Boxing Day, for absolutely no reason, but I was due to do my first Radio 1 show that morning so I bandaged it and refused to let it ruin my day. Then it didn’t bleed anymore for the next couple of days so I forgot about it. I was exhausted from working all the time, and the excitement of my radio shows, so I got the flu on Wednesday. I went to work Saturday night, had already checked my foot before my shift – it was fine – but then throughout the shift I started to feel really sick. Like, I fully thought I was going to pass out on multiple occasions. In the back of my head, I knew that the way I was feeling was how I’d felt when I’d had quite serious infections in my foot which had spread all the way up to the top of my leg, but that didn’t make any sense because I’d checked my foot three hours ago and it hadn’t even been a little bit red. (Mostly, I was willing what I knew to be true to not be.) So, I do the 8-hour shift, feel progressively worse, get home, boom: swollen and infected foot, cry myself to sleep, A&E the next morning, get told I need an operation to remove the infection, here we are day three in the hospital with antibiotics being pumped into my arm.

I’ve had operations before – six of them to be precise – but the only thing is, I don’t really remember them. The last one I’d had before yesterday morning’s was when I was seven years old, so yes, I’ve done this before, but also not really. What’s more, is yes, I’ve been in hospitals plenty and I’m no stranger to the A&E department or an infected foot, however, that doesn’t mean that I’m not frightened every time it happens. I mean, when I saw the state of my foot after my shift on New Year’s Eve, I literally said the words ‘I’m scared’ to my empty room in between my sobs before I fell asleep.

What’s strange, is that when I was little and I had my operations, I remember nurses and doctors telling me that I was ‘so brave’ even when I had tears streaming down my face. But I can tell you right now, yesterday morning when I felt the nurse wiping my tears as the anasthetic forced me to sleep, I didn’t feel very brave at all. Quite the opposite. And I think that the main problem I have with that word, is that it seems to imply some sort of choice, when the truth is that sometimes my foot just throws me to the bottom of a black pit, then terrifies and tortures me for a while. But the worst part is always that there’s no point in fighting; I have to voluntarily give in to everything that I hate, and I feel weak and small and none of it ever seems fair.

However, this time around I’ve made a point of silencing the voice in my head which tells me that I shouldn’t make a fuss, or complain, and I’ve told people what’s going on so that they can then support me. It’s not easy to do, because I think part of me assumes that sharing this intensely vulnerable part of my life will make people forget everything else they know about me and only see my disability, or they’ll think that I’m just being attention-seeking. Nonetheless, this Spina Bifida sh*t can be truly awful sometimes, and if I have to do it on my own I’ll crumble, so it might sound obvious, but it’s been a huge relief to see that if I actually tell people what’s going on, then I’ll get all the support I need. Plus, as traumatic as it is to be the one to live through it, it’s kind of nice to show people that I’m not exagerrating when I tell them that it can get bad – first-hand experience always comes in handy when you then ask friends about walking distances on a night out, for example.

So yes, hospital has not been fun lol. But I’ve done the operation, deep breaths have been taken, Disney films have been watched and plenty of love has been felt. Now let’s just round up the whole shebang by getting the bloody cannula out and my foot all healed so I can have some fun in 2023, shall we?

What do you mean you can’t feel it?

What do you mean you can’t feel it?

by elizabethmdouglas ♥ 1 Comment

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

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

This is normally how it goes:

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

Them: So is it really painful?

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

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

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

*and, scene.*

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

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

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

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

You’d hope.

My dissertation was about sex! :o

My dissertation was about sex! :o

by elizabethmdouglas ♥ 2 Comments

Considering that quite a few of you took part in the research, it won’t come as a surprise that I wrote my dissertation on whether physically disabled women are perceived as sexy by the societies they live in. (Big big thank you to everyone who took part btw). I don’t really fancy plagiarising myself here though, so I won’t go into the minute detail of the dissertation, but since so many of you contributed and were interested in the topic, it’d be rude of me to not give you the low-down of why I chose it, and what I discovered. So buckle up kids.

If I’m honest, my diss was partly another effort to understand why my love life insists on being so dire. In my first year of university, I wrote a blog about how a friend had asked me whether I thought my disability had ever hindered lads from asking me out or taking things further with me, and what I said then remains true for me now: yes, it has, but I’d be shocked to see anyone admit it. From all my research, and from what I’ve literally seen, able-bodied people are tentative to date or be intimate with physically disabled people (whether maliciously or not), and for the ones with the disabilities, this has at best resulted in being ignored or passively rejected, and at worst just straight-up abused.

The work that I’ve done so far is minuscule when compared to how much work needs to be done. I looked at ‘physically disabled women’ in particular but even that phrase is kind of hollow because it doesn’t even begin to describe the vastly diverse group of people it’s trying to categorise. Furthermore, I didn’t have the words or time to study the impact of race, gender, economic background, type of disability, and all the other aspects which would inevitably influence the experience of sexuality for individuals. I also didn’t have the opportunity to talk to disabled people directly; I used a tonne of literature, but nothing can come close to hearing the words from the ones who feel it. So, whilst my work was informed and (I hope) useful, to call it the tip of the iceberg would be a huge understatement, and I wouldn’t be surprised if I continue to write about this for the rest of my life.

Nonetheless, the overarching theme of this dissertation was one of acceptance and optimism from most of the people who answered my questions. What I will say though, is that often your optimism was naive; it was comforting, but it didn’t really line up with the reality of the world. People gave the correct response by saying that it shouldn’t matter if you have a disability, and it shouldn’t matter how that impacts sexuality because anyone can find love, sex isn’t a fixed thing, and disability shouldn’t ever threaten a person’s ability to experience pleasure within relationships. Only, saying that something shouldn’t happen, doesn’t make it not happen.

For months, I’ve been exposed to the disabled experience on a level that I’d never seen before: for the first time, I was reading and listening to things that felt totally relatable rather than 85% there. The fact is that like all of the ‘isms’, ableism is so ingrained within our society that just because I have a disability, that doesn’t mean that I don’t have prejudices against the disabled community. There’s plenty to unpack there, but I think I’ll leave that for another blog (or two, or three…). But to generalise, the truth is that we’re so concerned with looks and frightened by what we don’t personally understand, that the disabled body has been persistently and systematically defined as undesirable and in need of a cure. To put it even more plainly: I’m disabled, so that means that my body is wrong, so it can’t be pretty and it definitely can’t be sexy, and if someone does find it pretty, then that’s not because of the disability, it’s despite it.

Obviously, there are grey areas here, and each individual can (and is) judged to be beautiful, desirable, and every other positive adjective by individual people. But finding one disabled person gorgeous doesn’t a perfect society make. There need to be some HEFTY changes when it comes to what ‘society’ and individuals understand disability to mean because for pretty much all of history, it’s equalled a mistake that we should ignore and just wait until it dies (or kill it before it lives).

So…how did it feel to write this, when I was sort of writing about myself? Well, it wasn’t great to hear that disabled women are far more likely to experience abuse (psychological and/or physical) within romantic or sexual relationships than able-bodied women. Nor did it feel amazing to read countless experiences of disabled people like being asked to leave restaurants because their appearance might put people off their food, or being persistently pushed to the side and dismissed as irrelevant and pointless. It also almost brought me to tears in the library to read women say that it’d been easier for them to tell people who’d assumed that they couldn’t have children because of their disability that they were right when they weren’t actually right because they could have kids, but the support for disabled women just isn’t there since everyone assumes that they can’t have kids anyway and if they can, then they shouldn’t in case they pass their disability on. But again, that’s not even scratching the surface.

Disabled people aren’t the weak, infirm victims history and modern culture paints us out to be and there are so many examples of fulfilled, happy lives with a disability. However, I share the sentiment that I read basically all of the disabled community expressing, in that the worst of the ‘struggles’ I’ve already had and the ones I’ll continue to have aren’t because of my Spina Bifida, they’re because this world is doing its absolute best to ignore me until I croak.

The thing is though, I’m a loudmouth who’s got a loooot of years left and I plan on making people talk about this because, regardless of whether you’re disabled or not, it has everything to do with you. I hope that in some small way, my blog or whatever else I do in the future can contribute to disabled people actually being listened to and valued because we deserve your attention.

If I can manage that, then that’s a win really innit?

P.S.

Can we all pls manifest that I get a good grade on my diss lol IMAGINE

A day in the disabled life

A day in the disabled life

by elizabethmdouglas ♥ 0 Leave a Comment

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

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

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

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

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

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

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

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

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

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

I want to go for a walk

I want to go for a walk

by elizabethmdouglas ♥ 2 Comments

For me, disability causes a constant conflict between personality and body. Ever since I was small I’ve struggled to mesh the two together because I’ve never wanted to accept that there are things that I’ll never be able to do. From the age of about 8 until 14 I was awful for it: I’d just do everything that my friends were doing because I wanted to, and I’d rarely give a second thought to my feet. But then I’d end up with infections, and in a wheelchair. So living that way didn’t get me very far.

After about the age of 16 I’d managed to (sort of) make my peace with it. I accepted that I couldn’t ever live my life the way most people could, and I mourned it, but ultimately I realised that those are just the cards I’ve been dealt. I mean, my disability could be so much worse, and what do I gain from fighting it?

Then I was 19 and I had my gap year. I proved to myself that I could travel the world on my own: I went to seriously remote places, away from medical institutions, and showed myself that doing what I want to do doesn’t always have to end in infection and debilitation. It might sound trivial to you, but it was breaking news to me, my family and my doctors.

This year, quarantine happened and after a while the government started allowing people out for walks and exercise. This change to the lockdown brought so much relief to most people, but not to me because I can’t just go out for a run. I can’t just walk down loads of steps to the beach and then back up them, because if I do, I have to accept that I might injure myself. I might put myself in a wheelchair.

This is where we get back to how complicated disability is, because many of my readers have seen me in person and have seen me walk plenty of times. I can walk short distances, and I’ve been known to dance for hours on a night out, but sometimes it’s just luck that I don’t end up with a blister after doing these things. I’m a seasoned professional when it comes to internalising my worries and pushing my disability as far as it can go. I’m stubborn and I’m young, and I don’t see why all my friends can but I can’t. Like I said, it’s a constant conflict.

But I don’t write these blogs to be all ‘woe is me’. Loads of people have it so much worse than I do, and everyone does the best with what they’ve got. It’s just that if I’m going to write blogs about when I feel empowered by being a young disabled woman, then I have to show you the side of my condition which gives me no joy whatsoever.

Some days I just don’t want to be this disabled person. It makes me feel weak and suffocated. I don’t want to have to think about whether I can go somewhere, I want to be able to just go. Sometimes I look at my feet and wonder how it’s fair that I have to be the only person I know who can’t just wear normal shoes and have normal legs. I wonder how it’s fair that I’ll have this for the rest of my life, and how I’m supposed to get over it when there’s nothing I, or anyone else can do to ever improve it.

There are no solutions to these problems. Life doesn’t work in ‘fair’ and ‘unfair’ – especially when I don’t believe in any type of God. As far as I can see, random people get random sacks of sh** to deal with, and we move. I have a really good time even with the headache of my Spina Bifida, and it’s shaped me in so many positive ways. To be honest, if someone told me that I could flick a switch to get rid of it I’m not even sure that I would. Disability can enrich a person’s perspective on the world and life in many ways, but I’d never, ever, wish it on anyone.