Category: Blog

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

400 Days

On By Katy DalyIn BlogLeave a comment

So today marks a 400 day streak on this blog, but if you pay close attention to this blog, you’d know that it’s not strictly true. This is because they’re occasionally days where I backdate posts on this blog, to keep the streak, though I’m always honest about doing it.

What I’m saying is I know I’m never going to win any sort of record for posting on this blog, but that’s okay because that isn’t at all why I do it.

I write on this blog (almost) daily as it brings me comfort. It’s my place of control, where I can do, write and say what I want. Where I don’t need anyone else’s help to do write and say what I want. And having this streak, even though I have edited things to make it happen, makes me happy. And here is probably the only place where that is truly all that matters.

So if you’re still here reading my words, thank you for sticking with me this long.

In the spirit of being honest and this feeling like an important place to be that. I feel I have to say that when I posted this it came up as day 401, not sure what I’ve missed as I really thought yesterday was 399. Maybe I’m a time traveler. Who knows. But anyway the sentiment is the same.

A work complication

On By Katy DalyIn Blog, My Disability Truth2 Comments

I have been looking at getting some work, mainly because in all honesty I just want something to do with my time and a little extra income would be nice. But I do not have the ability, the energy, or the opportunity to work a full time job.

So I have to be sure that any work I find must not cost me the benefits I receive, as I need them to ensure all bills are paid. But they don’t make that easy.

Working within the benefits system is just so complicated, that yet again I feel like it isn’t worth what it will cost me, for what I’ll get out. It’s just too much.

It doesn’t make sense really, a system that claims it wants to get people into work, to be so difficult to navigate.

I wish I could just go and work in a shop, that that would be something I would be able to do. That I could just have something to do that would bring me enough income to be self-sufficient. But my disability, society, has to make things so much more complicated for me

I honestly don’t know why I keep trying, and yet I do.

But people who do not know better call me lazy, say I have not tried, when all I have done is try. I’m tired of trying.

I’m tired of not being able to work.

I’m tired of the system being so complicated.

I’m tired of it all being down to me to try, when it is clear others want me to fail, so I will.

I’m just tired.

I didn’t think you’d want to go

On By Katy DalyIn Blog, My Disability TruthLeave a comment

So the person I live with got invited to a party by a neighbour. I was also invited, apparently, but they told them I wouldn’t want to go. And I guess, it got me thinking.

I don’t know if I would actually want to go. I don’t know if that’s a fair question to be asked of me, when it feels like I definitely don’t get to make that decision.

Where the party would be I wouldn’t easily be able to get to. So I shouldn’t want to go anyway. I can’t actually work out if I want to go or I want to want to go. Decisions aren’t fair when they’re already made for you.

I’m angry that this one was made for me, but it was already made for me, before it was made. So I shouldn’t be angry, and yet.

When do I get to make a fair decision that isn’t controlled by the world around me or by my brain?

I’ll be in my room if you need me.

Both sides now

On By Katy DalyIn BlogLeave a comment
Image Description: This picture shows a silver car parked by a green hedge blocking the pavement completely.
The second picture shows a blue car parked by a green hedge, blocking the pavement completely.

These pictures were taken earlier this week in my local area.

They show something I have experienced regularly throughout my life. Cars blocking payments and forcing me in to the middle of the road.

Now of course pavements exist because roads are not safe to be walked in. Even less so when you are forced to stay in the road due to inaccessible pavements. Here the payments were made more inaccessible on both sides and so I had to stay in the road.

Without drop curbs streets can become inaccessible very quickly to me, pavements do not simply become inaccessible to me when they are blocked my vehicles, they become more inaccessible. Life becomes more inaccessible to me, it becomes that little bit harder.

And when I raised this issue in my area, I was told I was being selfish. I still do not understand why it is selfish for someone to want the same rights and access to the world as everyone else. How is it selfish to want the same?

I was also told that the person who cares for me should be helping me deal with my issues and I should not be doing it myself. I did not think that I needed saying but as it apparently does, you cannot suggest that a disabled person needs help simply because you don’t like what they are doing. I’m allowed to exist and do things others do not agree with even as a disabled person. To suggest otherwise is insulting.

Just don’t park on pavements.

A fun day out.

On By Katy DalyIn Blog, My Disability Truth1 Comment

So I’ve recently attended a friend’s birthday meet up. I get invited yearly, but usually can’t go, this year I’m was very happy to be free. And I have to say what a relief it was that they are also a wheelchair user.

I know it’s a horrible stereotype that disabled people should only have disabled friends. But it just makes things so much easier. I know that when we do things together it’s going to be accessible.

I wasn’t worried in the slightest about how accessible the day would be. I even went happily to somewhere I had never been before, something I wouldn’t normally do. If I was going somewhere completely new I would do a trial run of the area to figure out both how to get there and how accessible it is. But I didn’t need to do that here, and that was such a relief.

They even agreed to meet a few of us on the way to the place somewhere that we knew, including myself, to go to the place together. How nice was that?!

I spent a day not feeling disabled, not worrying about needing help. I was still slightly insecure over my incontinence issues, but as I got more comfortable in the day it was easier to deal with. But overall it was such a fun day, I was so comfortable and just got to be me. This doesn’t happen often.

This is why it’s easier to be around other disabled people, around other people that understand what it’s like to be you. It’s so nice.

Other people need to learn to be more inclusive and society needs to be more accessible in order to change this in anyway. Having fun shouldn’t be stressful, and for once it wasn’t.

No.

On By Katy DalyIn BlogLeave a comment

Do you practice religion?

There’s your answer but I guess should say more.

In all honesty while I don’t believe in religion I do believe in faith. I think organised religion has corrupted faith.

I like to think that wherever people go next it’s where they want to be and with who they want to be with.

Religion shouldn’t be uded for control or hate as it often is. And I also think people should experience other religions and faoth, so they can take in all the information available and make an informed decision. It’s surely bias to only learn about one way of living.

People just want to have fun.

On By Katy DalyIn BlogLeave a comment

So first of all, I want to apologise because this is another backdated post. I’m actually going to write this one and then write tomorrow, which is today’s straight after. But I think I can class this as a backdated post for a good reason.

For the first time in a really long while  I went out with some friends that I haven’t seen some of them in years, because it was one of their birthdays. It was such a fun day. And all honesty, I didn’t feel disabled for most of it. Which is nice.

Usually this only happens if what I am doing is incredibly accessible. it wasn’t. It was about accessible as everything else usually is. I’d say there weren’t many problems, but there were some. The reason I didn’t feel disabled I think because I was with other disabled people. While I’m not a fan on segregation in anyway there is something to be said about the ease of being with people who aren’t gonna question why you do things a certain way or why you can’t do certain things. There’s no awkwardness if I ask for help. I feel like I can ask for help, probably because I’m not the only one that needed to ask for help.

Inclusion is about more than just being in the room, it’s about being made to feel like you belong in the room. This is something I feel very people who are not disabled. And I feel many disabled people I just meet more than family for example.

It’s just that shared understanding. It’s just nice for it not to matter that I’m disabled for a while.

So I had a really fun day, came home and fell almost immediately asleep. I couldn’t have my Care because I’d stayed out late, but that’s not something I really want to get into on this positive post.

I’m going to lie.

On By Katy DalyIn BlogLeave a comment

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

On By Katy DalyIn BlogLeave a comment

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.