Tag: disabled

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.

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.