Tag: Cerebral Palsy

You have to be able to think into the future.

On By Katy DalyIn BlogLeave a comment

When you’re disabled, you have to be able to think not only about everything you currently need, but about everything you might need being left alone.

As I write this, I am sat at home hungry because I didn’t think about the fact that I would want food when earlier I wasn’t hungry. And because I am home alone, I’m not able to get food until the person I live with comes home. Therefore I’m just hungry, and essentially waiting for someone to come feed me.

If I had thought about it more, I would’ve had something to eat before they left or been left with something like crisps that I could eat on my own, but I didn’t. I just spoke to the person with her basically blamed me for not asking for something to eat before they left. But then I wasn’t hungry, and I wasn’t thinking. It’s hard to ask for things that you might need when you don’t need them. And the only person that suffers when I don’t do this, it’s me.

I don’t think anyone who isn’t disabled has to think like this. Sure there are sometimes when we all have to think and plan for the future, but when you disabled you have to do it nearly all the time. And that doesn’t make me any better at it just because it’s more important to me. You would think it would, but no.

I hate that even the basic things in life aren’t accessible to me if I haven’t thought ahead. And I hate that if I don’t think about this, I’m the only one that suffers for it.

I’m hungry.

Send food.

Being left out.

On By Katy DalyIn Blog1 Comment

This weekend my neighbours are having a party. Everyone was invited apart from me. It was just assumed I wouldn’t want to go.

Attending things with other people can be so difficult that I don’t actually know if it’s just better to not be invited sometimes. I don’t think I’m able to make a fair decision about whether I would or wouldn’t want to go to these kinds of events. Simply because of how awkward it would be for me to attend. It’s not a fair decision if it’s bias.

I just wish I’d be able to do things with those around me without it being an issue. Without the idea that maybe it’s better that I wasn’t invited, maybe being right.

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.

Access

On By Katy DalyIn BlogLeave a comment

When the wheelchair accessibility of a venue is so rubbish but they won’t let me leave without making my carer leave to who likes who we were supposed to see as well so you end up sitting in the corner watching How I Met Your Mother. This is why I go everywhere prepared to sit alone in the corner 😂😢

Image Description: picture of a clip from How I Met Your Mother on a phone, showing Lily and Marshall the captions read “there occurred a game-changing emergency.”

Make of this what you will. May or may not explain more later.

Concert fears.

On By Katy DalyIn Blog4 Comments

So tonight I’m going to another concert, and when you do this as a wheelchair user it always comes with a level of anxiety, especially when I go to a new venue.

Concerts are an odd experience for me, the music can help me feel free and part of a group, while the environment can make me feel more disabled than any other environment. It’s always hit and miss.

This is a concert I’ve been to before, and last time it was amazing, but my experience was helped massively by the venue. By the fact I could go in the crowd with everyone else, and be near the front.

The last thing I want is to be at the back, I’d rather be in the crowd and unable to see, rather than in some special area. In the past I’ve been in this area and unable to see anyway. The area isn’t really about me being safe, it’s about protecting the venue from being sued in anyway and I hate being in it.

But this time I know in advance that I will have to be in it, which I’ll admit it is better than not knowing. However it’s still causing me a great deal of anxiety. I’m hoping the experience will be worth the stress that venues place on me because of my disability. But this isn’t something I will know until I get there, but I can live in hope for a good experience right.

Wish me look.

The little lies.

On By Katy DalyIn My Disability Truth3 Comments

Part of being disabled (at least for me) is that I have to trust what people tell me. And for reasons I still don’t understand, they often lie to me.

It’s not big lies, usually. It tends to be just telling me something is washed, or clean, or has been picked up when it hasn’t. Or maybe they looked somewhere for something it’s not there, but when I and look for it it’s very obviously in the place where I said it was. Occasionally the lies are a bit bigger, being told a place is accessible when it isn’t, or being lied to about what the accessibility of a venue is like.

I just don’t understand why people don’t tell me the truth. While the truth would still be frustrating, it’s not more frustrating than a lie. When you rely on people to help you, being lied to is a lot worse than you might realise.

It makes it hard to trust people, when you don’t know if they’re lying to you. And you have to be able to trust people when you’re disabled, my life wouldn’t work if I couldn’t trust the people that I need help from.

But even when they lie to me and I know I can’t trust them, I still need their help. And that can be hard to live with emotionally.

I just can’t really understand how hard it is to tell people the truth.

I’m supposed to show tonight

On By Katy DalyIn My Disability TruthLeave a comment

And I really don’t want to.

I’m sat here in what I call my comfy chair thinking about the fact that I am comfortable, and in about an hour I’m going to be a lot less comfortable.

When you’re disabled, you often have to do things on other peoples schedule. Which means I have to have a shower or at the very least get into bed in an hour whether I want to or not. Now this is strictly true because I can say if I want to both of them.  but if I was having a shower today, I can’t have one until Tuesday. And if I say no to getting in bed it also means I’m saying no to getting changed. This means I will be uncomfortable and dirty by the time the 12 hours have passed and I’m able to get that care again.

So I don’t really see it as a choice, when the decision is so stacked against me. Do it later, doesn’t really exist for me, and on days like today that can be incredibly frustrating.

I just don’t want to move. But I know I’ll have to soon.

Another luxury that’s not a fair question.

On By Katy DalyIn My Disability Truth, Writing Prompts2 Comments

What countries do you want to visit?

If the truth be told, I’m struggling a lot with the freedom that others around me have that I do not. Call me selfish or self-centred, but this is my place to tell the truth, is it not?

I feel like every new accomplishment that those around me make, is a stab in the heart, a reminder of what I will never be able to do.

Sometimes it feels like everything is that. Every party I cannot attend, every mess I cannot clean, every drink I cannot make for myself. Sometimes, it’s really hard to exist in the world when it feels like everything I can not do is everywhere.

For that reason, this question is not reasonable or sensible to me. It simply doesn’t bother thinking about it because it will never happen.

That said, I would love to visit America, and perhaps Malta.

I can do some things on my own.

On By Katy DalyIn Blog, My Disability Truth2 Comments

So after being out all day yesterday, the person I live with seemed surprise that I told them I would be okay to handle what we’d being doing today on my own if they wanted to stay home and sleep.

To make it clear I won’t really be on my own for a lot of the day, but because they won’t be with me for all of it, for part of the day I would be on my own. Specifically while we get to the place where we’d be meeting family.

This is a well practiced route that I do almost every Monday, when we go for a family breakfast, so I’d be fine. In some ways it’s actually easier for me to be out of the house on my own than in the house on my own. My house is just that inaccessible in parts to me. But still they seemed surprised that I’d be okay to handle this on my own.

I think it’s easy to forget when you see how much help I need on a regular basis that I don’t need help for everything. That although some things are easier for me to get help with, it doesn’t mean I couldn’t manage them alone.

Interestingly as I write this I had to call for help, but remember what I said about my house not being that accessible to me? Blame the environment for that one.

Anyway, the way they said this was like they expected me not to go if they weren’t going, and honestly that annoyed me maybe more than it should. Like I said this is something we do every week, and a few times I’ve been too tired to go, but I’ve never expected them not to go because I wouldn’t be. It’s like they forget I am an adult that can do things without them. Maybe they do? Maybe everyone does? Maybe I do? I don’t know.

There’s something else I want to add about this weekly get-together. It started years ago, and initially, it wasn’t something I was invited to, which really upset me, and on some level, I think it still does. When I questioned why I wasn’t invited, I was told they just didn’t think I wanted to go. And I don’t know if they genuinely believe that, or if it’s just what they tell themselves to make themselves not feel guilty, or which answer to that is worse.

I personally think they decided that it would be too difficult for me to get there, and so decided just not to invite me. I never questioned it because for a while I didn’t actually know it was happening. But this wouldn’t be the first time my family have done something like that. Made the decision for me about going somewhere or doing something, and so never asked me about it. They once went to a theme park when they knew I wouldn’t be home.

This isn’t something I can bring up with them, as it will definitely start more drama than it is worth. I doubt they even remember what they did. But I do. I remember the exclusion, feeling like I was too much to be included even by my own family. That’s something that I still struggle with now. I often say I don’t want to do things, if I think having me involved will make things more difficult for others. It’s not only my family that have excluded me in this way throughout my life, but it definitely hurts worse when it comes from them.

But back to today, I will be going to the family breakfast, whether or not I have to get there or back to my dad’s on my own. It will be happening. I deserve to be involved in things, I deserve to be involved in this family. And this is how I want to be involved. Plus, I really like being able to have chips for breakfast.

Just remember that if you’re reading this, know that you deserve the same from your own family whether or not they make you feel that way. You deserve to be part of the gathering, part of the memory, part of it all. And if they exclude you, it is always a choice, there could’ve always been a way to include you. That is a decision they made, it is on them not you