Tag: Real Life

Freedom.

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

What are the most important things needed to live a good life?

I understand that this can be a complex question, because it depends what you think a good life is, but I guess that’s the point.

Personally I would have to say one of the most important things needed to live a good life, whatever you believe that to be is Freedom. Freedom can look different to everyone. It can be the safety to live independently from others, or the ability to choose what you wear, how you look and where you go when you want.

Essentially I think Freedom is defined as living whatever life you want to live, within the bounds of not causing harm to others obviously.

Everything else I can think of that someone might need to live a good life, all stems from this idea of having the freedom to live the way they want to live.

A good life is a life that makes you happy, a life that doesn’t intentionally hurt others, life doing the things you enjoy.

I know this is a vague answer to the question but I don’t really want to be more specific, as I know that a good life can only really be defined by the person who is living it. The one thing I am clear about is that you do not live a good life if your life involves intentionally hurting others. This is never a good life, just keep to your own good life, and let others live theres.

By my own definitions here I don’t life a good life, I can’t do what I want when I want it because I need help to do it, make of that what you will.

When you need help for a lot of things in life, Freedom is conditional, so in my opinion it’s not really freedom.

I don’t live a bad life, by any stretch. I live the best life I can with the situation that my life has been presented to me. But I struggle sometimes to see it as a good life, by what I truly believe a good life to be.

I’m going to lie.

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I’m not going to say that it bothers me when you do things I can’t do, but it does bother me.

Something are just accessible to me. even when they’re supposed to have accessible options, they just don’t, that is just a part of my life. And when that comes up like it did today, of course I’m going to say that it’s okay with me if you still do whatever it is. It really isn’t. But I’m not gonna be the reason that you don’t experience something. I’m going to minimise as much as I can how much my disability impacts what you are able to do. I’m the disabled one, not you.

But it’s going to upset me that I can’t be part of the experience. I’ve learnt though to keep those feelings quiet, to not make everything about the fact that I can’t be a part of it. I’m not sure it’s ever going to get to the point where it doesn’t bother me though. But I’m sure I’ll get better at hiding it.

The biggest problem here, other than the lack of accessibility, which should always be seen as the primary problem. Is the way I deal with this, emotionally. Logically, I know that something not being accessible to me is not my fault, but emotions make difficult. w

I would be lying if I said that it didn’t cross my mind that if I weren’t disabled, I would be able to have the experience. That I am the problem, not the world around me. And even though I have spent my entire life disabled, I know and understand internalised ableism very well. That me being the problem feels too much like the truth, that every time I fall for it, even just a little bit. And I have to convince my brain it’s wrong.

When I look at this without emotion it is obvious that my brain is wrong. It is obvious that I cannot and should not be blamed for the inaccessibility in the world me. I didn’t choose to be disabled and I didn’t create the world the way that it exists. I just live in it the same as you, the same as anyone else. This guilt, shouldn’t really be mine to take. And yet every time I start by making myself take it, and going backwards from there.

I’m hoping that eventually I will learn not to blame myself so much for things that are not my fault. That I will learn not to blame myself for feelings that I cannot control. That I will be able to validate my own feelings the way I validate others, because I deserve that same treatment and care. But I honestly don’t know that I’ll ever get there.

Truly accessible concerts

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So last night I went to another concerts and in contrast to my experience at my last concert, this one was very accessibility.

Image Description: Shows my hands and the person I was with touching the barrier at the concert.

While some others people at the concert didn’t like it that I was there and took up a bit more room, I honestly don’t care. I deserve to be there and take up space.

I was not a danger to anyone there as I have been previously told I am. My safety and there safety wasn’t compromised. Maybe this would be the case in a heavy metal concert, but dokt worry I just won’t be going to those.

This was a life-changing experience for me, not only the concert, but to simply truly be part of a crowd of people. Concerts are about more than music.

I just want to be able to experience concerts like everyone else, and I don’t think that’s too much to ask for. I just wish it wasn’t so hit and miss as to whether I get to feel truly included in experiences just because I’m disabled.

Leave me alone.

On By Katy DalyIn My Disability TruthLeave a comment

I feel like social services are trying to make me choose between something I really do not want, but I need. And something they think I don’t need but absolutely want.

No one tells you about the times you know what you want, but you can’t do it. I guess that’s not a reality many people understand.

It’s not even a choice.

They get a window into my life, that everyone else gets to keep closed. And they’re using it to judge me.

I don’t like it. I just want them to leave me alone.

I can’t do this again.

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.

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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.

I don’t really like holidays anymore

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

What is your favorite holiday? Why is it your favorite?

I used to love holidays.

But as I’ve grown up I’ve realised just how small my world seems to be compared to those around me. How many options they have to spend with other people that aren’t me, and how few options I have.

Holidays are difficult for me, not wanting to get in the way. Feeling like I’m around because people think that they have to have me around, rather than them wanting me around.

Part of me would just rather to be alone on me own for most holidays. But I can’t do that without the person I live with needing to be with me. So I’m kind of stuck going so they can go.

This is before we even get the fact that of the limited family members whose homes are accessible to me, none of them are easy for me to get in.

So I guess this one is a reminder that not everyone likes holidays. Holidays are not easy for everyone. So be kind.

If I tell you I’m not bothered by you doing something without me, I’m probably lying.

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This time I definitely am. But telling the truth about this just seems selfish so I won’t.

It hurts honestly, when those close to me do things without considering me, even when I say it’s okay. I feel like I’m being left out, and sometimes that just really gets to me.

I know that living my life as a disabled person there is always going to be things I can’t do, there is always going to be things that aren’t accessible to me. If there wasn’t I wouldn’t be disabled. And part of me really wants to tell people that if I can’t do something they shouldn’t be doing it. But I understand how completely selfish that is so of course I wouldn’t do it. Of course I wouldn’t say I don’t want you to do that because I can’t. Why would I do that? But the truth is I really don’t want you to do some things because I can’t do it.

It makes me angry and upset, and quiet. I’m not really sure what more to say about this situation. I’m sorry that I’ve not said more. But I think I’m still angry, whether at myself or them I’m honestly not sure. I want to say I’ll write more later, but if you’ve read this blog for a while you know I would probably forget.

I’m also not having a shower tonight, and if I’m honest the definite reason behind that is because I do not want to get more in there way. I do not want to take time away from them having fun by showing, because that honestly just doesn’t seem fair to me.

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.