Tag: disability

Not my favourite birthday present

Not my favourite birthday present

by elizabethmdouglas ♥ 0 Leave a Comment

On Monday I turned 21, had a lovely time, ate lots of food, got a free shot thanks to my birthday badge: all-round good time. Unfortunately however, I woke up the next day to find a huge blister on my right foot. 😦 And for most people, this probably wouldn’t have put much of a downer on their week but in my world, a blister can seriously ruin my life for a while.

This time I didn’t cry or freak out about it when I saw it, I just kept saying ‘it’s okay’, ‘it’s fine’. And it is okay because I know how to deal with it, plus it’s lockdown anyway so it’s not like I’ve got lecture halls to go to or anything. But it’s upsetting and annoying, and I don’t live with my family anymore, so I don’t have anyone close by who actually knows how upsetting and annoying it is.

I guess that that’s part of growing up though, isn’t it? You move out, and you experience things on your own – without that safety blanket.

It’s not like I’m completely new to this; I went travelling for a huge chunk of last year, and am going into my second year at University now. However, I’ve been lucky for a long time with my feet because I’ve not had any big complications. This has largely been due to me looking after myself, and having all the correct things in place to make sure that I’m not caught by surprise. But sh** happens, and it can happen completely out of the blue.

What can add even more stress and annoyance to times like this, is the fact that if I continue to be optimistic around people, that can imply that the situation isn’t a big deal. But I won’t sit and mope about this blister because I don’t want to waste my time like that, and I don’t want people to think of me as someone who whinges all the time. Plus, most have never seen me in a wheelchair or with an infection anyway, so they couldn’t understand if they tried.

Saying this though, last year I remember feeling really frustrated and lonely at times when my new friends didn’t understand my disability. It wasn’t because they weren’t trying to learn about it, or trying to help me out, it was because I know that they need to see it be bad before they can better understand what help I need. But then obviously, I’m not itching for it to get bad enough to show them…

You have to acknowledge that getting to know people properly takes a lot more time than freshers week, or a few months at university. It can be difficult to realise that the people you view as some of your closest friends don’t actually know you that well. But people do their best, and what they don’t know now, they’ll learn after time.

Discrimination is surprising

Discrimination is surprising

by elizabethmdouglas ♥ 1 Comment

The response to last week’s blog has been amazing: people were completely outraged! And this was so weird (lovely !!, but weird) to me, because my getting blocked by students at my University didn’t even make me that angry: it wasn’t an unprecedented event. But you were all so shocked and furious! So, I realise, that you have no idea of just how poorly your disabled community is treated…

So let’s actually talk about disability and society, and let’s first take the idea of ‘looking’ disabled. Well, I don’t ‘look’ disabled. But the fact that I don’t has had serious consequences on the way society treats me.

There are two instances from Secondary School relating to this which particularly stand out for me. The first was when I was in Year 7: I was 11 years old and I’d recently developed a blister on my foot from walking too much, or having a fold in my sock, or something else tedious. (Yes, folds in socks can shove me in a wheelchair for months: it’s that stupid.) So in an attempt to avoid going into my wheelchair, I started to use the lift for disabled students to cut down my walking.

I was outside the lift one afternoon on the way to my next lesson with my best friend when my Deputy Headteacher came over and asked me what I was doing. I politely explained how I had a note from my parents, that I had a blister and that I had to use the lift. She didn’t look at my note, and she wasn’t interested when I started to lift my trousers so she could see my shoes. Instead, she yelled at me saying ‘a blister?! I’ve never heard such a thing! You’re stopping disabled students from using this lift!’. So I went to lesson in floods of tears: completely humiliated.

In this moment I didn’t ‘look disabled’ to my Deputy Headteacher: I didn’t have a noticeable body deformity, sound disabled, nor was I in a wheelchair. Flash-forward 2 weeks however, and I was in a wheelchair…no challenges as to why I was using the lift then…

The other memory I have is from being in Year 10 – the 3rd time I was in a wheelchair at Secondary School. My friends were pushing me through the halls to our lesson, and a student I didn’t know saw us. He shouted ‘piss off! I saw you walking last week, get out of that thing!’ at me across the hallway. I was stunned but my friends shouted back at him and we kept moving. Clearly, to this boy I was a liar; I was the person the media and government demonise as ‘abusing disability services and benefits’, and he took this moment to publicly expose my lie.

…

The world is constantly fed this finite version of what it is to be disabled: what it looks like, what it sounds like and what it feels like. But nobody ever takes the time to work out whether this stereotype is true. So just think about how many people you know without a disability: are they all the same? Do they all have the same bodies and personalities and emotions and ideas? Now think about applying that to disabled people. Do we all have the same disabilities? Do people who even fall under the same type of disability, have the same variation of that disability? Do we all look the same? Sound the same? Feel the same?

The answer is clearly ‘no’. Still, we’re grouped into one blob and are treated poorly by people and institutions who take very little time to try and actually understand us.

I’ve never been bullied directly because I’ve always had people standing up for me, and I’ve always had the confidence to stand up for myself. But I’ll always be vulnerable to discrimination by institutions and the general public because of an unwillingness of people to sit down and actually learn about things they know nothing about.

If you’re outraged by my experiences then start learning about other people’s, because I’m such a privileged white girl and my exposure to discrimination is nowhere near as bad as it gets. Trust me, you know more disabled people than you think, and you have more preconceptions about disability than you recognise.

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.

Sometimes I’m in a wheelchair

Sometimes I’m in a wheelchair

by elizabethmdouglas ♥ 0 Leave a Comment

Occasionally I develop a problem with my feet, and it can be as small as a blister or a cut but it almost always becomes infected. I can’t walk on it until it heals, and *POOF*: I’m in a wheelchair.

So…what’s that like?

Well obviously it differs from person to person. It’s also pretty impossible to generalise ‘a normal day’ of having an infection for me because: how did it happen? do I have the correct footwear? do I have enough footwear? am I at school? am I at home? am I at University? is it the holidays? am I still growing? have I just had an operation?- the list goes on.

Now is the longest time I’ve gone without using a wheelchair because I’m able to just avoid it since I don’t have school anymore. But so I can paint a picture for you, this is how it was during my last experience when I was 15 and I stayed in that bloody thing for 6 months:

I’d wake up, check my foot, take the bandage off and see what level of infected I was that day. Then I’d crawl into the bathroom – I can’t hop, my balance is non-existent lol. I’d do some next-level spider-man moves to get into the shower without allowing my infected foot to touch any surface, then I’d get washed. Finished, I’d have to carefully dry around the wound and make sure to not damage it further. Next, I’d have to dress my foot.

So I’d take out my medical kit, with all the specific products my feet require. I’d make a perfect bandage, ensuring that there were no creases in the entire thing because creases mean blisters and blisters are not my friend. It’s also important to mention that I don’t have any feeling in my feet, so infections don’t hurt: I recognise when my foot is infected simply by looking at it. So these bandages have to be perfect because the second I put my sock on, I’ve got no idea what’s kicking off down there.

NEXT, I’d have to get changed without accidentally catching the bandage on my clothes, or making it roll up once I put my sock on. Whenever it did catch or roll up, I’d have to start again. Then I’d slide down the stairs on my bum; hopping around the house using my zimmer-frame. (That’s right, I used to have a zimmer-frame, I’m cool.) My dad would bring my wheelchair into the kitchen and after my breakfast, I’d strap in. Once at school he’d push me to my friends and I became their responsibility for the day.

At every point in my life, all of my friends have become friends with me whilst I’m physically independent. So we’ve never started off with them being used to, or knowing what it’s like, for me to be in a wheelchair. Thus being in my wheelchair doesn’t just change my life, it changes the relationships my friends and family have with me.

Thankfully, my pals were mostly brilliant and loved the novelty of pushing me around. But we were children. So there were times when they were accidentally really unsympathetic or insensitive because they just didn’t know what it was like. Plus, they knew me out of the chair, so were used to me doing things for myself. This meant that sometimes they forgot that I wasn’t asking them to go and get me food, or to push me to the bathroom just to be annoying: I was asking because for that period of time, I couldn’t do it for myself.

And they also didn’t realise just how humiliating it felt for me to have to ask them to do these things. Even though I physically felt fine, since I never have any pain, all of a sudden I was overwhelmingly dependent on other people.

I’ve chosen to live a life where most of the time I’m so independent that I don’t seem disabled at all. And that has meant that in those moments when my Spina Bifida catches up with me, and all the actions I take behind closed doors to monitor it come into full view for the rest of the world, it’s just really hard to navigate.

It’s easy to say ‘I’m in a wheelchair, so everyone should be sensitive to that and help me with whatever I need’, but people are people, and you can’t tell them how they should or shouldn’t be. You can ask for help, but you can’t also expect them to fully comprehend something they’ve never had to experience before.

This is a part of my life that very few will ever know the full scope of because ultimately my disability is mine to deal with – not anyone else’s. My family and friends have always done their best to support me when I’m in my wheelchair, and their best is more than enough. And thankfully, being in a wheelchair is not a reality that I have to live in very often – but it does still happen. And even when it does I try and stay as chirpy as I am normally, because why make my frustration worse by spreading it?

After all, I’m one of the lucky ones: at least I always get back out of the chair.

Can you be hot AND disabled?

Can you be hot AND disabled?

by elizabethmdouglas ♥ 0 Leave a Comment

On Monday I had some really gratifying conversations with my group of friends. All the points we made and discussed, are points that I want to write about in future blogs but one in particular sparked this entry.

For a while I’ve been wanting to discuss what it’s like to be disabled in the dating world, but I’ve never really known how to articulate it. The truth is: I find it really unfortunate just how much it probably does affect how I’m perceived by boys, because it’s something about myself that I absolutely cannot control.

When my friend asked me whether I think my disability affects my dating life, my immediate answer was: yes, but I don’t think that anyone ever told me. My response may come as a surprise because as I’ve said before, I’m aware that once someone spends time with me, it’s very easy to forget that I’m disabled.

The thing is though, no matter how confident or independent or self-sufficient I am, I will always be disabled and will always have to live my life with certain adaptations for my health. When people get into a romantic relationship with someone, everyone has some preconceived idea about what it’s going to be like. These preconceptions come from all the popular culture and media we consume on a day to day basis – and have done for years. But very rarely does that popular culture include examples of relationships where one person is physically disabled and the other is not.

In the past year, I’ve gotten particularly impatient with my failed attempts at romance – as you’ve probably noticed hehe. Whenever one has failed, like most people I find myself looking for reassurance that sometimes it can work out. So I look around me, and at the media. But never ever ever ever do I see myself reflected in the relationships shown. I don’t often see couples on the street where one of the two is disabled. I definitely barely see it on Instagram. And I’m not sure that I’ve ever seen a famous person with a physically disabled partner walk a red carpet.

If I have seen a couple like this in the media or popular culture, it’s often felt tokenistic. By this I mean, in television programmes or Snapchat ‘Born Different’ stories it’s examples of severely disabled people and their partners. Whilst it’s (rightfully) always a celebration of those love stories, I still don’t feel represented or particularly comforted by them. And with that, the disability always seems to overwhelm everything else that makes that person attractive. Can you not be hot and disabled? Can that not be a thing too?

I don’t feel disabled enough to relate to those permanently in a wheelchair or with more severe illnesses than I. But then I’m still disabled, so I can’t fully relate to anyone who isn’t.

Since we don’t see examples of couples where one person is (not severely) physically disabled, subconsciously that plays a part in how we date. I’m not trying to say that it makes someone a bad person for not finding someone with a disability attractive, because that might not even play a part in how you feel about them. But then again, the intimidation which might come with how little you can relate to that part of someone’s life and the degree to which you feel prepared to try, might well shape your decision about dating someone.

Explaining what it’s like to be disabled to someone who has no idea, is an impossible task because no matter how hard they try, they just can’t access that type of human experience. So that’s obviously going to be intimidating when dating someone because you literally canNOT connect with them on such a huge level. And that might not be what you want. I totally get it.

In light of this, this blog is not meant to be a guilt-trip; I understand why people might do what they do – both consciously and subconsciously – when it comes to dating. Obviously I’d love to feel more represented, and to feel that my disability 100% doesn’t affect my dating life, but I can’t change the world overnight with my ramblings.

What is important, is that you know that just because someone has an issue that you know nothing about, that that doesn’t then mean that you would be useless at helping them with it. Disability needs to be more visible and in all honesty, we need to see more relationships in the public eye where a disabled person has an ‘able’ partner.

The day I see someone ridiculously famous walk a red carpet hand in hand with their physically disabled boyfriend/girlfriend, I think I might actually shed a tear.

Walk it

Walk it

by elizabethmdouglas ♥ 0 Leave a Comment

So here I am: it’s Tuesday, I’m full of whatever illness my friends at college have gifted me and I’ve somehow been bothered to make it to my 2 hour Korean lesson. The day’s going well. (This blog is going to be pretty emotionally-charged by the way: strap in).

What I didn’t need added to my day, was some old, male, traffic warden peering through my windscreen whilst I was STILL IN MY CAR, to check if my disabled badge was a fraud. For the record, it’s weird and intimidating to have a stranger looking inside your car whilst you’re still in there. But the core of my annoyance, was the fact that I’m sick and tired of the disabled parking bays situation.

Now, if you aren’t disabled, or don’t have any close relatives or friends who are, then you might be thinking: what situation? Is there even a situation?

Well, my dear reader, yes there bloody well is a situation. And it’s one that has made my parents furious for years before me, but now I also have the joy of being angered by it too. Lucky me!

So it’s simple, right? You go to any public space and most of the time there are parking bays with bright yellow hatching, and the universally recognised symbol for disability. Everyone knows that that then marks those parking bays as exclusively for people who need it i.e. ones who own a blue badge issued by the government, indicating that they’re legally recognised as disabled. I won’t go too into it now, but trust me when I say that you don’t just get that badge. You have to undergo what is in my experience, an insanely gruelling, somewhat traumatising process so as to be recognised by the government as ‘eligible’ for it. But I’ll write a blog detailing that process another day- look forward to that one, it’s a corker.

Anyway: you need a disabled badge to park in the space closest to the destination, seen as it’s predominantly the people who’re disabled who’re unable to access things and places easily. Surprise!

Why is it then that when my dad dropped me off at Secondary school, on average only 2 out of about 8 disabled bays had cars with blue badges in them? One of which was my dad’s car. With my badge. I’d also like to add the information that my school was attached to a Special Needs school: attended by children with severe disabilities, whose parents probably needed to use those parking spaces when picking them up.

Why is it that this also happens every time I go to a supermarket, a shop, or just anywhere really? Why did I have to ask the receptionist at my University college today – a college which prides itself on diversity and acceptance – to ask the woman who uses a bay every week and doesn’t display a badge, to please park somewhere else?

You might wonder why this is so offensive to me. Or, like the traffic warden, think me ‘silly’ for even being offended by it. (His patronising choice of words really added to the moment, I must say).

It’s offensive because when people park in these spaces, they’re not thinking of how insanely immoral and unfair what they’re doing is. Those spaces are for people who literally need them. People who can’t walk that extra few steps to the building. People who need equipment to move and to live. People who have in recent years had to fight so hard, just to be deemed ‘eligible’ by the government for things that they need to survive.

If you park in those bays when you don’t need to, then you’re depriving a disabled person of their right to get on with their life and to be independent. I’m not always in a wheelchair, and on the surface it appears that I walk pretty well, but if I can’t park in those bays then I might have to walk a distance which will cause me to develop an infection, and to go in a wheelchair for months on end. So if that’s what’s at stake for me, then think about the people who’re wheelchair bound and what that space might mean to them.

Again, this might sound like an overreaction, but trust me when I say that it’s not.

It’s not just the walking distance, it’s also the backlash that comes from people abusing those spaces. Namely, the fact that it creates a culture of doubt. If those spaces were respected, then I wouldn’t have had some old man looking into my car to see if I was lying today. I wouldn’t have had him looking me in the eyes in disbelief as to why I was asking him not to do that. He told me that he was checking the disabled badge ‘for’ me: to ‘help’ me. I obviously understand why he checks, but I resent the fact that he thought I would lie.

So I appeal to you, to think about your actions and to just park somewhere else. Just walk those extra steps. Not just because you have the physical ability to do it, but also because I would never ask for something that I don’t need. I don’t abuse the system, in fact I probably don’t use it enough. But I need to park there. And I’m tired of defending my right to that space.

Eyes up here please

Eyes up here please

by elizabethmdouglas ♥ 1 Comment

When I write or talk about my disability, I have to remind myself that the tiny things I experience are not also a part of everyone else’s day-to-day. So this Sunday, I’m going to tell you about one part of my life which may surprise you, though it seems tediously normal to me.

To put it simply: I can’t step out of the house without someone staring at my shoes. For instance, just the other day I was walking in my college at University and one of my fellow St Aidanites walked past me. She stared at my shoes for the entire time we were passing each other – a good 15 seconds – and at no point did she take the time to tear here eyes away from my feet to look me in the eye. Now. People. I get it. Often when you see my shoes it’s the first time you’ve seen anything like them in your life. But come on. Is it really that exciting? Did your parents never teach you that it’s rude to stare? Plus, the object of her amazement was literally just leather boots with some metals bars coming slightly up my legs. Wowee 😮

Growing up I became so used to people staring at my shoes and not looking in my eyes that I was sort of numb to it: on the street, on a bus, in a museum, at the cinema, at school, at the park, with my brothers, with my friends, on my own – you name a time and a situation, someone was probably having a look. Amazingly, I can’t remember ever really being phased by it as a little girl. But then I got older, and I got angry.

A particularly memorable experience is when I was 12 years old and I went to a shopping centre with my family. I was standing on my own in a queue for some food, when I saw a middle-aged woman abandon what she was doing just to gawk at my boots. She literally stopped in the middle of the floor and just stood there looking. I’m not even exaggerating. I was furious and humiliated, so I crouched down to make her realise that there was a person (a child) wearing those shoes who could see exactly what she was doing. She didn’t apologise after she realised I’d seen her, she just walked away. I’ve had more instances like this than I care to remember; with some days gifting me more than one.

Fortunately it’s not always like this. Very rarely, I’m made speechless when someone sincerely says that they like my shoes. Like! The first time in my life someone did this was when I was walking up the stairs at school, aged 17, and a supply teacher said ‘Nice shoes’ to me as he walked past. I stopped dead in my tracks with my mouth wide open, mumbled a stunned ‘thank you’ and watched him walk away. In all honesty I was ready to pounce because I thought he was taking the mick, but I realised that he wasn’t: he actually meant it. So I legged it into my common room and still in disbelief, told my friends about what had just happened. That was the first positive comment I’d ever gotten about my shoes from a stranger, and to this day, that’s only happened a handful of times.

Now that I’m older, somehow I don’t really care about my shoes or the stares. Although if you catch me on a bad/insecure day and I see you staring, then I will hate your guts for a second. Regardless of my mood though, I’ll always at least notice it.

I know that people stare because my shoes and my disability are probably things that they’ve never seen before. So if that then means that I have to be the one to watch you gawk at me like an object for a few seconds, so that you won’t do it to the next disabled person you see then that’s fine, I can take it. Just remember that whatever you’re staring at is being worn by someone, with feelings, and eyes to see you too.

Raising a disabled child 101

Raising a disabled child 101

by elizabethmdouglas ♥ 1 Comment

As a young girl, I was incredibly confident, outspoken, enthusiastic, and so fortunate that my parents never allowed my disability to suffocate that. My childhood had a fair few tumultuous years: I had operations, infections, insufficient footwear causing more infections, new parts of my condition popping up as I grew and so many other problems I can’t even remember. All of this was then exacerbated by my free-spirited attitude leading me to accidentally injure myself and then not understand why I couldn’t walk like the other kids, obviously ending in huge upset.

I don’t think I’ll ever be able to imagine how completely I could’ve been crushed by my Spina Bifida. There are children out there who are unable to live away from it, and in all honesty, for a time I was one of those kids. Aged around 7, I spent the best part of 18 months in and out of hospital and in a wheelchair and yet, my family managed to make me feel just like any other kid. They worked tirelessly to protect my personality from my disability: a feat I will probably never be able to repay them for.

It’s well-known that parents need to be supportive when their children are struggling in order for that child to feel safe, loved and happy. But having a child with a disability that you know nothing about requires a whole other level of support. To make life all the more challenging, my eldest brother has Marfan Syndrome and has his fair share of medical problems. So not only were my parents navigating raising 4 children whilst working full-time as English Literature teachers, they were working out how the hell to cater to 2 separate disabilities, whilst ALSO encouraging those children to feel equal to their non-disabled siblings and the rest of the world.

They managed it though.

I spoke a lot in my last entry about how complicated it is to live with a disability, but an important aspect of my experience is that I spent the first years of my life living as disabled with my family. I was so overwhelmingly supported that there was never any aspect of it where I was alone.

When I describe my childhood and adolescence as perfect, that isn’t to say that there weren’t points where I really struggled. For instance, I was in a wheelchair at 3 separate points in Secondary School – prime time for teenage insecurity and social paranoia. What made my early years perfect though, was the fact that everyone around me constantly made me feel normal. In the moments when I was physically or emotionally isolated from my peers at school, my parents and brothers kept me laughing and focused on a positive outlook on life.

This did then mean that at the beginning of this year, before my travels and before moving to University, I was confronted by the loneliness of moving out. I knew that I’d make friends at University, or wherever it was I went, but I now knew that my support system was about to be miles away. My family and friends who all knew my condition as well as a non-disabled person can, weren’t going to be 2 seconds away. This would mean that I would have to re-explain myself to people, bringing attention to my limitations in a way I’d never done on my own before. There would be no-one who knew me: I had this moment of realisation on the floor of my room, crying to my Dad, with an infected foot, weeks before my plane to Nepal.

It was only when I started to travel that I realised that I can do this on my own – even though it’s definitely not been easy so far. And it’s only thanks to the immense amount of love and support I had whilst living at home that I now (sort of) know how to. Thanks to my family, I’m confident in social situations and don’t shrink into myself when my disability is mentioned. Owing to my parents’ strength, I’ve learnt how to get respectfully passive aggressive with institutions or individuals when they seek to deprive me of things I need, because to some I don’t appear ‘disabled enough’ (side-note: what does that even mean?..). But most importantly, it’s thanks to all of my family’s unwavering support that I know that as lonely as disability can be, there will never ever ever be a time when I’m alone – no matter where we all are in the world.

And that, ladies and gentlemen, is how you should raise a disabled child.

I’m that disabled girl with the shoes

I’m that disabled girl with the shoes

by elizabethmdouglas ♥ 4 Comments

Out of all of my blogs, this one is the one that I’m most unsure about because I worry about the assumptions you’ll make when you can’t see the person talking to you. I don’t want you to have a picture of me that isn’t what I’m really like just because I’ve now told you that I’m disabled. Hence why this post wasn’t one of my first…

When meeting new people, whether that be in Primary or Secondary School, at a party, in an airport, at work or even just meeting my brothers’ girlfriends, my disability has sparked interest. It doesn’t affect my speech, my brain or much of my appearance, so it’s almost hidden. This has meant that most people don’t always realise I am disabled until they spot my legs and after speaking to me for a while they delicately venture to say: ‘is it okay if I ask about why you have to wear those shoes?’. And generally, I prefer people to ask since it shows that they’re interested but also it means that they won’t continue to stare. Which, I’d like to mention is always obvious, no matter how subtle you think you’re being. Also, I use ‘generally’ here because sometimes people have opted for: ‘what’s wrong with you?’ as their phrasing. My reaction to this question is always going to be a bit radgy, seen as there’s nothing wrong with me but what’s wrong with you for phrasing it like that buddy? However, *exhale*, most people mean well so occasionally you have to swallow your pride and go with what you know they meant.

First and foremost, disability is an umbrella term. Even if 2 people have the same disability on a piece of paper, biology is such that 2 bodies will never be exactly the same. So it follows that those 2 individuals will have different variations of the same thing, and extremely different experiences of living with it. My Spina Bifida is a lump on my lower back which holds a ball of knotted nerves inside of it. These nerves are those which would allow me to have complete feeling and movement in both of my lower legs. During my childhood I had 6 operations which sought to drain the fluid in my lump and to correct the position of both of my feet because to put it simply: I can’t walk properly. I also have bad circulation in both of my lower legs and feet, meaning that if I’m cut or have a blister, not only can I not feel the pain (and therefore regulate putting pressure onto it), but it takes a lot longer to heal and is then vulnerable to infection. These cuts or blisters can be caused by anything ranging from a fold in my sock to me walking too far or standing for too long. If I develop a blister and/or an infection, I can’t walk at all and have to use a wheelchair until it heals.

I HATE my wheelchair more than anything in the world. Even now, the idea of me having to use it would reduce me to tears. The reason being that generally I don’t have to use one and am naturally very self-sufficient, independent and stubborn. My wheelchair strips me of my independence and when I’m in it, I never know how long it’ll be until I’m out and myself again. I was never encouraged to feel too sorry for myself during these times, as I always knew that I’d get out of the chair and that there are so many people in the world without that luxury. But that approach doesn’t really make it better in the moment.

To be honest, my perception of disability is complicated. I’ve definitely always struggled to communicate my true feelings about it (like now lol) because when I say things like I don’t want to join my University’s disabled society, it comes across as if I’m rejecting the disabled community. In reality I think that what I reject is the implication that because I’m disabled by definition, that that is all I am as a person. I see it as me being disabled first and everything else second, which is not how I ever want to be described. I’m proud to be disabled, and I think that disability awareness and support groups are vital for society, it’s just that I’d prefer for my disability to be peripheral in discussions rather than the focus. However it’s becoming painfully obvious to me as I grow into the world, that I need to be more explicit about my experiences as a disabled person since there’s just so little varied representation out there.

I don’t love my Spina Bifida but I do love how it’s shaped me, and I categorically do not want to be pitied or patronised, because that never does anyone any good. Everyone has their own issues to deal with and mine just happens to be this. I’ve never wanted to dwell on it but I think I’m learning now that there’s a difference between self-pitying and just describing how it affects my life. In order to be accepted and treated equally, people need to talk about things such as disabilities more often so that when they’re brought up everyone doesn’t apologise for asking. It shouldn’t always be a touchy subject because it doesn’t have to be a negative conversation.

So I’ll do my best to be that person to talk about it, knowing that for me disability is only one of the many defining factors of who I am as a human being.