Tag: Disabled People

Can you just.

On By Katy DalyIn My Disability TruthLeave a comment

You know all those little things that pop into your head to check when you’re trying to sleep in the middle of the night?

Well I can’t check them.

I can’t check where that charger I don’t really need is, or if the front door is locked. Or if one of the babies are doing something they shouldn’t be in the night.

But despite not being able to act on them, I definitely still get the thoughts. I still want to check the heating is turned off or if the front door is locked.

And again, I can’t check them.

When it’s at it’s worse every thought feels like nothing more than a reminder of the things I cannot do.

I just wished the thoughts matched my body. That my brain and the rest of me were on the same page, just once. It would really do me a favour if I no longer had the things that my brain stated to me at the moment which I’m not able to do them.

Fatigue sucks.

On By Katy DalyIn My Disability TruthLeave a comment

Fatigue is a big problem for me at the minute. And I did the thing you shouldn’t do and googled, it’s going to get worse.

It’s really hard to get the motivation to do thins when I just think hey I’d rather be asleep than do that. And if I do massage to catch it where my brain is on board, it always seems like my body is on a different page.

There are many reasons why it can seem that is my body that makes the world inaccessible to me, and this is just one of them. I have to push myself against my own body.

I’ve tried to regulate my sleeping pattern and even if I can do so for a while, it never seems to stick. Something always happens, I sleep to much or not enough for one day and it completely throws me off.

I’m going to really struggle this week. I have a big day this week where I’ll be travelling all day, and I can already tell I’m going to be exhausted for it. Afterwards though it should help my brain and my body to reset.

So I guess this one’s just to say bare with those of us who seem like we never sleep or sleep to much. We’re trying. It annoys me to.

Concert drama.

On By Katy DalyIn BlogLeave a comment

I know I’m lucky to have problems with going to concerts as a disabled person. As that means I’m in the position to both financially and physically to be able to try and figure out how to get myself to a concert. But in the accessible world that we live in this doesn’t make it easy.

One of the caveats of going to a concert if you are disabled person is too alert the venue that you will be going to that you are disabled. But this is not a straightforward as it seems.

There is often unlimited number of spaces for those in wheelchairs or with other disabilities. Sometimes, depending on the venue, this can actually make sense. But more often than not numbers are limited to make things easier for a venue. To ensure that they take a box in the best way for them, rather for concertgoers.

What really bothers me personally is the fact that venues will not allow myself to go in the general admission area when it is accessible to me. They simply say no. I am a health and safety risk.

They don’t actually care about my health and safety or anyone else’s health and safety. They simply do not want to get into trouble if someone were to hurt themselves on my wheelchair. Honestly, that feels like a them problem. But they insist on it making it a me problem.

This is even harder when I don’t feel disabled despite how disabled I may look. I don’t want to go in the special area. I’d rather be in the general admission area and not be able to see then be in the special area with a perfect view. I want the proper concert experience and I think that I deserve that. I don’t think it’s too much to ask for. Don’t even get me started on the special treatment that some disabled concert viewers believe they deserve. I’m not talking about the separate area. I understand why some people might need that. That’s why I think it should be an option, not a necessity. But someone interrupted perfect view, as if that is realistic of a concert. I’m not just really annoys me.

The process of getting accessibility arrangements for a concert can feel like you’re asking of venues permission to attend. Something that disabled would have to do.

For this reason and for the idIocracy of the system, I tried to stay out of the finer details of organising my access to concerts. I really hate it. I know that I’m going to get too angry at the whole thing and not be able to deal with it properly and sensibly.

Concerts are a polarised experience for me. They even make me feel completely included and part of society in a way I don’t feel anywhere else. or extremely disabled, very in the way as I don’t belong there at all. There seems to be no middle ground. And yet I keep going because I want the good experiences. I deserve the good experiences, I think.

As I write this post there is a chance I may not be able to go to an upcoming concert that I already have tickets and VIP meet and greet for. This is due to aforementioned bizarre system of accessibility. I’m honestly trying not to think about it because I really want to go to this concert. And I’ll be heartbroken if I can’t.

Anyone reading this that may think disabled people get things for free because of schemes like companion tickets. If you’d rather deal with the things I have to deal with in order to get the free tickets you’d be welcome. I would swap in heartbeat. I would trade all cheaper tickets I’ve ever ever got just to attend concerts as a normal person. I just want to sing and dance.

Carers

On By Katy DalyIn My Disability Truth, Writing Prompts1 Comment

What are your morning rituals? What does the first hour of your day look like?

The carers get me changed and dressed and then I tend to go back to sleep in my wheelchair. 

This depends on whether I have to do things in the day, mind you. If I have to do things that involve going out, and have a say in when they get done, I try to get them done as early in the day as possible. In this case I wouldn’t go straight back to sleep. I would wait until I’ve done what I needed to do.

If I don’t have a say in the times things need to be done, I would probably sleep until the time that I need to do whatever it was.

If I get a say in it, which because I need help to do if, I don’t always. I like to get the dogs walked as early as possible. In all honesty this is just to get it over and done with so that I can go back to sleep.

Fatigue sucks let me put it that way.

People.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

I can’t avoid them forever and I know that, when I’m with them I don’t even want to.

But when I’m on my own, thinking about meeting with people, leaving the house just seems like to much. It’s always worth it in the end, and locally I know that, but it doesn’t make it easy.

I don’t know if this anxiety comes from growing up disabled, or if it would just be a part of me anyway. It’s impossible to know having grown up disabled, which parts of me or my experiences would be different if I wasn’t disabled. But I suspect or maybe some part of me hopes, that it would be.

Growing up in the world, that is an accessible to you, can often feel like you’re growing up in the world that was made specifically to be inaccessible to you. Your existence in that world is nothing more than an annoyance to those around you. That’s a hard thing to deal with every day of your life for the rest of your life. It’s one of those feelings, that’s always there, even though it’s usually in the background and I can ignore it. but I do have a feeling that the residual existence of this feeling is what causes the anxiety that I’m left dealing with at the moment.

Either way I’m stuck what I have now. And let’s just say that’s a dislike of being around people, and sometimes even leaving the house.

I really wish I didn’t feel that way, that I could just go out without feeling like I didn’t want to. That I could want to go out.

But either way I will, and I know, I will have a good time when I do it. It’s just the feeling leading up to it, the anxiety, the fear of being judged, that I have to learn to deal with.

Sorry people. I’m trying.

I don’t know if I think about being non-disabled to much.

On By Katy DalyIn My Disability Truth1 Comment

Sometimes I spend a lot of time thinking about what my life might be like if I wasn’t disabled. The life I may have been able to live if things were different, if the world that I live in, became accessible to me.

It’s nice sometimes to let my imagination wander, but I do wonder if I do it to much. I do wonder if I spend to much time thiking about what could be, and if it causes me more harm than good. No amount of time thinking about things maybe being different is actually going to make the world accessible to me. No amount of staring at a steps is going to turn them into ramps. This is paraphrasing of a quote by Ali Tanaka, if you want to look into it more. No amount of focusing on not being disabled, is going to make me not be disabled. But the world is hard, and sometimes you end up there.

I know that logically I need to focus on my reality, focus on today, on where I am now. To make the best of a bad situation, as it were. And some days I can do that no problem, some days I know my life relative speaking is pretty good. Other times I’m really struggling with the idea of existing for the rest of my life as me.

I’ve tried to do something with my life, to make the best of it. But there’s only so many times you can fight against the inacessability of the world around you, before you wonder why you even try. But I deal with things the best I can, as we all do.

The funny thing, that isn’t really funny, is how I get judged by people who don’t know me for how I deal with life. A post like this would be called to negative, even though ofren it’s more real than the positivity I feel forced to disaplay to the world. Honesty itsn’t something people tend to want out of you when your disabled.

When I started this post I knew where I was going with it, but the more I have written, the less I have been sure. Sorry, I’m trying.

The inaccessible of the irrational.

On By Katy DalyIn BlogLeave a comment

It may be a hodge assumption on my part, but I truly believe we all do irrational things from time to time. Like checking the front door is locked, or in my case the same spot on the floor is clean.

Just because you’re disabled, and doing these irrational things might be more difficult for you, doesn’t mean it takes away the desire to do them. I wish it did.

I sometimes wish I didn’t want to do the difficult things in life and then maybe my life wouldn’t feel so difficult. But in reality it means that I would have to do not want to do almost everything. Even then it doesn’t mean that I wouldn’t experience these feelings again. And I know no one can live a life and not do anything.

I want to check that the same spot I watched my the person I live with clean on the floor is clean, but to do that I need her help. I need her to put the cleaner in reach, and of course she asked why I wanted this. So when I told her the truth she got upset with me, as if I’d accused her of not cleaning it properly. This isn’t what I was doing. It’s just annoying me, and I would feel better if I could check it.

If I wasn’t disabled, or to phrase it from happier me, if my home were more accessible. I would be able to do this without asking for her help, and so I wouldn’t annoy her. But it isn’t so I have annoyed her.

Sometimes I just want to do things for myself, but that is almost never possible when you’re me. That really gets to me sometimes. To be honest it makes me feel like my own existence is inaccessible to me. But this isn’t the first time I’ve experienced this, and I don’t think it will be the last.

This blog is honestly one of the only places I feel truly free, and as in control as possible.

I’m going to try and do the floor now, wish me luck.

After writing this post last night ready to post this morning I discussed it further with the person I lived with and they cleaned the floor for me, meaning that I didn’t need to do it myself. I have some thoughts about that that I wanted to share as well.

So I didn’t have to clean the floor myself, which saved me physically, but I feel like having someone else do something for me again has had an emotional impact on me. I know I could have done it myself if I was given the chance, but sometimes when you visibly struggle doing something, people don’t want to give you the chance, I think that’s what happened here. They meant well, but they didn’t even want to let me try to do it themselves, and I didn’t want to upset them by arguing that I could do it myself. So I just let them do it.

It makes me feel like I’ve failed at another physical goal I have set myself, I feel like I’ve failed at something that’s so simple that I should be able to do myself. I just wanted to try, to have it done my way, and I didn’t get that. I’m trying not to feel to guilty about that honestly, but it can be very hard. To be honest with you, I rarely get the chance to have things done the way that I want to. But that’s just what happens when you need a lot of help from others, you rarely if at all get any control over it.

It sounds ungrateful, I know. But just imagine if you had no say in all the little things around you. If you couldn’t decide exactly how your coffee was made, because when someone does a lot for you, you can’t ask them to remake coffee that is just wrong. That’s to ungrateful.

It’s not being able to do the little things that really get to me. And that’s why I’m trying not to overthink the floor, remind myself it’s done now, and in the grand scheme of things it doesn’t really matter now.

I’m glad I have the help I have, I just want the space and time and access, to do things by myself sometimes.

I’m not used to it.

On By Katy DalyIn My Disability TruthLeave a comment

There are things I’ve dealt with my entire life. The price of being disabled in an ableist world. The little things that are difficult about being me. I’m not used to them.

I’ve been told that I should be thankfully that I’ve never known different. As if that somehow means I don’t realise I’m disabled. As if never being able to look for the things that I want or look after myself. Should mean that I should never want to be able to do those things.

That’s not true.

There are days, or moments, where I would give anything not to be disabled. Where I just wish I could do the things I want to for myself. Where I could just find the things I’m looking for.

It never goes away, not completely. The desire to be free. I guess it’s human nature.

I don’t know that I’ll ever be used to being disabled. All I can tell you is right now that I’m not.

Fatigue sucks.

On By Katy DalyIn My Disability TruthLeave a comment

Sometimes I think I’m so used to be tired that I don’t even notice that I’m tired anymore. I struggle to say I even have fatigue, it’s just me. Like the pain and discomfort, for me it’s my normal.

And then there are days like today where all I can feel is tired. Where the world feels a little bit slower and I’m fighting against the tiredness in me, as well as everything else.

Now I should say something clever or at least a little bit profound about living like this. But I honestly just don’t have the energy for that today.

I need to go back to sleep, but the joys of being me I don’t actually know if I’ll be able to sleep. I guess will have to wait and see.

Freedom

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

You’re going on a cross-country trip. Airplane, train, bus, car, or bike?

The freedom people get when they are not disabled will probably never cease to amaze me. The freedom just to answer questions like this, to not be stopped by who they are when they try to do so.

Many of these modes of transport aren’t accessible to me, and those that require planning.

As a full time wheelchair user, an airplane is not accessible to me, it is simply too risky. If you don’t understand what I’m talking about, then you are lucky.

While a train is generally accessible to me, with assistance. There’s no guarantee that all the stations I may want to go to are accessible to me. In fact from experience, money aren’t, and this often determines exactly where I will travel.

While buses at least in my area are accessible to me, they are only accessible to me if there isn’t already someone in a wheelchair on the bus. One day, the people that designed for which transport might learn that multiple disabled people can and often do travel at the same time.

Certain cars are accessible to me, but not many. I cannot just get a lift off anyone. And while I can learn to drive a specifically adapted vehicle, to do get the vehicle would cost me money I don’t have. This is before I even know whether driving is something I would be physically capable of.

I’m going to just say that we bike is concerned, I cannot ride one and we’ll leave it at that.

You don’t travel to a place on a journey, you visit that place as well. Accessibility doesn’t stop in modes of transport.

The world isn’t generally accessible for people like me in various many ways. I don’t really get to explore questions like this, without an element of ignoring reality. There’s a word for this, which took me as surprising amount of time to remember at 3:30 am. Cognitive Dissonance.

I think somebody’s gonna read this and wonder why did I take it so seriously? It’s obviously one of those writing prompts like what would you do if you won the lottery? Reality isn’t really supposed to be considered in these situations.

But I’m not really good considering reality when someone asks me these questions. I’m not really good at the cognitive dissonance. I’m thinking about myself and situations I might be in. My disability is such an integral part of who I am and the experiences I have. That it’s hard to separate myself from it, even in the situations.

I suppose I don’t really know what it’s like to think as a non-disabled person. I don’t really understand what it means to have that freedom on any level, whether that be thought or reality, it doesn’t seem to matter.

Maybe if I had a bit more freedom, in reality, it might be something that would reach my imagination, a little bit easier. Then perhaps I could answer these questions as they were intended to be answered.

The only way I reach this level of freedom in thought, as I am sometimes able to reflect in my writing, is to completely distance myself from the thought. In reality, my freedom is always limited by the world around me and there is nothing I can do about it. As soon as I put myself in the situation, my reality hits again, and I am limited by it.

Please forgive the state of this post as my sleep deprived brain is unable to reread it and make sure it actually makes any sense at all.