Tag: Reality

The worst thing about being disabled.

On By Katy DalyIn My Disability TruthLeave a comment

There’s a lot of rough things about being disabled, we all have different and valid experiences, but I’ve realised something that I think is the worse part as I’ve gotten older.

You’re still disabled when everything else happens.

Disability doesn’t go away when the world keeps turning, whether it’s good or bad things, you are still disabled through all of it. Whether someone is in hospital, or they’re going on holiday, you’re still you. Trying to exist in a world that feels like it doesn’t really want you there, and trying to be some part of the person you feel like you are on the inside. It never feels like enough.

But you can’t say that, because then you’re making everything about you, and the nature of your existence means that you do that enough already.

You just have to keep moving, keep trying, and ultimately failing.

Welcome to the club

On By Katy DalyIn My Disability Truth1 Comment

I wouldn’t say I wish chronic illness or disability on anyone, but as I age and everyone I know slowly joins the disability club, it’s an interesting experience.

Watching their entire life change as they learn to cope with things I’ve been coping with my whole life. Watching others care because it’s new to them, and knowing it won’t last when they loose interest.

I don’t mean to judge anyone with this post, it’s just what I’m observing. It’s like everyone around me is starting to join the club, just like I told them they would. And sometimes I just want to go “ha I told you so”.

If you’re reading this and you’re not disabled just reminder that Disability is a matter of when not if, one day it will be you.

Incontinence

On By Katy DalyIn My Disability Truth4 Comments

I’ve been peeing on myself my whole life. Sometimes it doesn’t bother me, sometimes it’s the most annoying part of my disability, and I can’t tell which it’s going to be until it happens.

It’s hard to have a problem that society only views one way. To know that because of things I can’t control there’s always going to be some people that don’t see me as an adult, and I can’t change that.

I’ve been asked periodically about whether I would still be disabled, if I had any choice in it. And the truth is, I don’t know. My disability is a massive part of my existence and I don’t know who I would be without it. But one thing I know for sure is that I wouldn’t be incontinent if I had a say it in.

It’s not even the physical aspects that put me off here, though they’re not great. It’s the emotional and social aspects of incomtinence that are the hardest.

If you’re wondering what prompted this post, I’ve peed on myself today. I’m saying it on here, not only to make myself feel better, but also as a reminder that it happens and it’s okay.

Grudge prompt?

On By Katy DalyIn My Disability Truth, Writing PromptsLeave a comment

So as I try to get today’s post in before midnight, so that I don’t need to backdate it, I see that I would actually quite like to answer today’s writing prompt. However, I’ve already done this and for some reason you’re unable to answer a prompt once you have posted it on your blog. Now, that would make total sense if they didn’t reuse writing prompts. And I honestly can’t remember what I wrote for this original prompt and would really like to answer it again again. At the very least, I think I should be able to see what I previously wrote to answer the prompt so I would know what I said before. But as it sounds, So as it stands I’m just going to give answers prompt go again.

Quick reminder of a regular disclaimer on this blog. A lot of this post in particular is going to be written by voice to text, it’s not particularly accurate all the time and I don’t really have the energy to closer go over the post to ensure it makes perfect sense. So please do let me know if there are any mistakes you find the only if they affect what the text actually says. I don’t write my black post to be marked.

So the prompt I want to answer simply ask if you are holding a grudge what you were holding about? And that is a hard question to answer then I thought it would be when I just wanted to start this prompt.

I think I will always hold a grudge against WordPress for not letting me answer this prompt twice.

But in all serious, I think I will always hold a grudge against society before excluding me. It makes so much sense when you’re on the outside that no one should be on the outside because you know what it feels like like. It’s hard to listen to society explain away it’s okay that you’re left there. Sometimes I’m just really mad that they don’t rip it down and start all over so that everybody gets a fair shot. Other times I’m mad that I’m the one on the outside that other people get to live the life I will never lead. And not only am I supposed to be okay with that all of the time, if I’m not, it’s my fault for not being positive enough.

You will be in the way.

On By Katy DalyIn My Disability TruthLeave a comment

The reality of being disabled, and living in an inaccessible world, is there are something situations where you’ll just be in the way.

One of these is other people’s medical situations. When you want to help, you can’t. And because you still need help regardless of what is going on in other people’s life, it’s easy to feel like even more of a burden.

This post was supposed to be longer, was supposed to be about me saying that if you’ve felt this way it’s not true. But given I feel like this at the minute it’s hard for me to give confidence I don’t have to others.

Just know that despite how you feel it’s not your fault. And I know that doesn’t change the situation, but I hope that it makes you feel that little bit better.

There’s no nice way for me to say this.

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Sometimes I wish what I could do was the line for whatever everybody else is able to do.

I’m very aware of how selfish this is, but sometimes it just gets really old to watch people do what I never will be able to. It’s hard to always be the one that’s okay with being left out.

It’s hard to always have to be the bigger person. And if I am honest I don’t think I am as much as I want to be. I don’t really want to stop people doing things. I just don’t want to know that they are doing them.

It’s just hard to see every day.

It’s a bit much.

On By Katy DalyIn BlogLeave a comment

A bad experience at a concert can really through me, and that’s what happened last night.

If you want to know more specifics about the experience you can see the TikTok I made here. A poor inaccessible experience, and that’s putting it lightly, throws the entire image I have of myself as a disabled person into question.

It makes me wonder why I even try, if I’m just going to be treated like that. It makes me wonder why I even try. It makes me feel more disabled. 

It shows me without a doubt that it’s society that makes me disabled, and that makes me sad. It makes me sad because I know there’s nothing I can really do about the way they want to treat me.

I just want to enjoy a concert. I don’t understand why that’s to much to ask.

Wealth is relative.

On By Katy DalyIn My Disability Truth2 Comments

I spend a lot of time just scrolling on various internet platforms, and if there’s one thing I’ve learnt, it’s that wealth is relative.

Seeing people complain about the price of things they’ve inquired about, that I don’t even have the money to look into, is a wild experience. The price of getting a swimming pool in your garden has gone up, oh I feel so bad for you.

Sorry, I know this is a very cynical post. And while I’m a strong believer in people’s right to do whatever they want with their money, sometimes the reality of this is just difficult to witness.

I think it’s because I know that society is going to keep me poor. Don’t get me wrong I live comfortably, but I am never going to have the kind of disposable money needed for a pool. I know those that do have the money have worked hard for it, and they deserve it. But I’m not even getting the chance to work hard to change my situation. And sometimes that just gets to me.

I know compared to some I have a lot of money, but compared to others I know, I have nothing. And I feel like I’m constantly torn between it could be worse and why isn’t it better.

I don’t know where I was really going with this post, as it goes against what I believe to differ that people couldn’t talk about there problems just because it could be worse. I guess I’m just airing my own problems and that’s that.

If it wasn’t obvious, if I win the lottery, which I do not play, I will be getting a pool, or a jacuzzi.

I can’t be left alone.

On By Katy DalyIn My Disability Truth4 Comments

Sometimes I forget that, because when disability is your normal you don’t feel disabled.

But when the person I live with came to me tonight and asked if it would be okay if they stayed somewhere overnight in a couple of months, I wanted to say sure, because I don’t want to stop them doing anything. But my first reaction was what do I do while you’re not here?

Now I’m lucky to have someone else that can come stay with me for the night, so that they can go and do what they want to do and I still won’t be alone. But it dawned on me then that means I can’t be alone. And as I write this, I really don’t know how to feel about that.

It’s like a reminder that I’m still disabled. And people who know me who aren’t disabled might find that odd because I am very obviously disabled and it doesn’t make sense that I would just forget. But I really don’t feel that way most of the time.

In many ways, disability can be a mindset. But this isn’t the positive mantra you think it is. It can lead to a disconnect between the body and the mind, that I’ve had trouble dealing with all my life. And can make the reality of realising I’m disabled, difficult to deal with at times.

Well at least you’re in the building.

On By Katy DalyIn Blog1 Comment

When was the last time you saw a live performance?

This is the prompt for today, but as I’ve answered it before it won’t let me answer it again. I’m at one now.

Getting into this building wasn’t easy for me, it was honestly testifying. It was something I can’t be sure I would have done if I knew what was expected of me from the start.

I was essentially pulled up several flights of stairs in my wheelchair, using an old but honestly good accessibility aid. I’ve included a picture of me using this below.

Image Description: A photo of myself in my electric wheelchair being pulled up stairs. My hands are gripped tightly on the armrest of the chair.

As this photo shows the whole experience was terrifying, and as I write this I have to go back down again.

Knowing the artist I’m here to see, I’m certain it was worth what it took to get me in here. But if I’m honest with myself I’m still upset by this whole experience. I shouldn’t have to go through this to have fun. Fun shouldn’t be this hard. Fun shouldn’t be hard.

The anxiety of this experience is going to leave me in more pain than usual for the next few days.

I’m torn between writing more about this now, while the emotions are fresh or focusing on the fact I’m about to here one of my favourite artists live.

I’m going to focus on the music for tonight.