Tag: life

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.

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.