Tag: Disabled People

Knock knock, who’s there?

On By Katy DalyIn Blog1 Comment

First of all, I’m sorry about the title of these posts. I’ve been watching criminal minds and it’s making me feel… creative. Please don’t look too much into that.

Advance warning of things is very important for me as a disabled person. It’s the only way I can really exist in the world independently, or as independently as possible. When something is sudden, it can be accessible to me. Whereas with warning might have been able to do something about the inaccessible situation, and therefore make it accessible to myself.

That being said, I am aware that not every situation can come with an advance warning. And it is in these sudden situations that I find myself more likely to be at the mercy of my disability. In other words I am more likely to face inaccessibility in new situations. Which itself makes me more wary of them and explains why I prefer advanced warning of situations. But as I’ve said, I know this is not always possible, and I recently experienced a situation like this.

My area had a power cut recently, this left me with an unusable air mattress for a short period of time. But thankfully a small amount of increased pain and discomfort was my biggest problem during the short term without power. The most difficult part and the most inaccessible part of the evening happened before the power actually went out.

This night I was alone, just by chance, when there was a knock on the door that I was unable to answer. After learning about the power court, I now know that the knock was likely someone to warn me of this. But up the time I had no idea who was knocking on the door or why they were knocking, and this was very unsettling for me.

Note to self, I really need to replace my door camera.

But it wouldn’t have really helped in this situation, besides telling me who it was at the door. It would not have meant that I would be able to let them in or answer the door myself. And I know that I wouldn’t have felt comfortable to speak to them through the camera, even if it had this function.

There were two reasons I was unable to answer the door on this evening. The first, and the most important being that I wasn’t in a chair that I am able to move myself. This chair is what I refer to as my comfy chair, and is a wheelchair that is just that. The cushions are softer and it is able to sit me in different positions. But it needs pushing by another person, so I am unable to move it when I am in it.

The second wish I was able to answer the door is because of the babies. My lovely little fur babies, pictured below.

Image Description: This image shows my 3 pets lying on my bed, facing towards the camera. The first is my yellow Labrador Imogen, who is lay down. Next to her is my brown Cavalier, King Charles. Bella who is sat. Next to her is my grey cat Ellis who is lay down.

If I was aware that I was going to have to answer the door to somebody, I would ensured both that I was in my electric wheelchair so that I could answer the door. And that the animals were safely away, so they would not get out while I did answer the door. But if there is a sudden knock on the door, and the animals are not safely where they belong. I will likely not be able to answer the door.

Even if I were in my electric wheelchair which would enable me to try to put the animals somewhere safe, I generally don’t even try to door this when the dog goes. This is because I’ve had a lot of experience of the people at my leaving I am able to safely get to the door. So trying when I know I will fail, and they will leave, is simply wasted energy.

To anyone reading this, that may think that I shouldn’t have animals if they make me unable to answer the front door when someone knocks on it. Just know that I would rather have the animals, than answer the front door. Even without my fur babies, I don’t always get to the door on time, so while they make it more difficult, they are not the root of my difficulties answering the door.

When I order food, for example, I have to put the babies away before the food arrives and wait by the door. As if I try to get to the door after it goes, they will leave and the food will be left on the floor where I am unable to reach it. And yes, I learn this the hard way.

It may sometimes appear that someone chooses to make the world inaccessible to them, by a choice they have made, which seems to make the world more difficult for them. but it’s important to remember that everybody is entitled to live the life that they want to, to make the decisions that they want to make, so long as no one gets hurt. And that these decisions don’t need to be justified.

The world could be made more accessible for me as a disabled individual, and as someone who has fur babies.

Assuming that the person that knocked on the door was something to do with the power cut. I know that I am already listed on the vulnerable register for the people that provide my power. They could have a note section on this list which highlights those that need to be called as opposed to just have their doors knocked on in situations.

I just wish people thought about accessibility in emergency situations beyond having a list of those who need help. My name being on a list isn’t necessarily as much help as you might think it is.

It is also important to remember that the flexibility a person has in a situation isn’t always up to them. If they can’t be as flexible as you want them to be in the situation, don’t make them feel guilty for it. Especially if a little bit of common sense tells you that it isn’t their fault.

There’s someone in the house.

On By Katy DalyIn My Disability TruthLeave a comment

Don’t worry, this someone is expected and they’re only stating the night. But I get a bit uneasy having strangers in the house, even when they’re expected.

I feel like they’re judging me. Testing me on how good I am at being disabled. That’s how I feel when I am out in public. But my home is supposed to be my safe space, it isn’t that when they’re strangers in it.

It’ll be okay, I know it’ll be okay but I don’t have to like it.

This is when I feel antisocial. It’s not that I don’t want to be around people it’s that I don’t want to be around people in my safe space. Logically, I know that it’s okay, that I feel this way, that it makes sense. But it might not make sense in the way that my behaviour plays out as a result.

I didn’t even leave my room when they came. I figured it was better that I stayed out of the way. And maybe deep down, that’s why I don’t like to be around people, because I just don’t want to be in there way.

Maybe this adds to me looking disabled. Disabled people don’t want to be around other people after all. It makes sense that I would fulfil another stereotype, whether I like it or not.

By the time this post is published they’ll have gone. They’ll go and things will go back to normal. And I can be as antisocial as I want in my own home.

I can go back to being as close to being alone as I can be, and try to convince myself I like it better that way. Maybe if I actually keep convincing myself that it will be true one day, and at least that part of my life won’t feel like such a contradiction.

Nighttime.

On By Katy DalyIn BlogLeave a comment

I want to be alone a lot of the time, at least I think I do. But my disability means that the times when I’m alone are often the most debilitating for me.

Take now for example, as I write this post I’m lay in bed, and I find that one of my chargers isn’t working. I have other wires but they are not where I can reach them myself. And while I could wake the person I live with, and they wouldn’t mind, this is not something I deem important enough to wake them after 12 o’clock at night for.

In the past when I have had a problem, but not a serious enough problem, I have created bigger problems that I deem worthy of asking for help for. For example dropping my bed control, without which I am unable to move in the night, which causes so much pain that I am unable to sleep. But that isn’t something I will be doing tonight.

No matter how much I find myself wanting it, being alone reminds me what I am unable to do on my own, it reminds me just how disabled I am. Being alone for any long period of time is always going to inaccessible to me. And sometimes, like right now, it is difficult for me to accept that reality.

I wonder if I do you want to be alone or if I just want to be able to do things for myself? Or if what I really want, is others not to have to do the things for me. While all those things sound the same, I don’t think they are. Wanting to be able to do things for yourself and not wanting other people to do them for you or different. One is about independence the other is about being a burden to those around you.

But when you can never be alone for any meaningful length of time. When you always need the help of others to do the simplest things. You are always going to be a burden, or at the very least feel like you are a burden, in some way or another.

Maybe the reason I want to be alone is because I don’t want to feel like a burden to anyone. And when I’m alone I can’t ask for help, so I can’t bother anyone, so for a little while I’m not a burden.

Not being disabled will always be inaccessible to me. And that means the life of those who aren’t disabled, the life of true freedom and independence, will always be as well.

So why call this post nighttime?

Well, if it wasn’t obvious that tends to be when I am alone, the most thanks to my messed up sleeping pattern. I’ve heard it said before that nighttime is the worst for your emotions, as this is when they are free to control you. And honestly right now I would have to agree.

Nighttime is when I am alone. Nighttime is when I realise being alone is inaccessible to me. Nighttime is when I cannot sleep.

Who I am feels inaccessible to me.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

I know that’s a weird statement, but bear with me a second. I’ve posted several times about the disconnected feel between my body and my mind, and that can make who I am feel inaccessible to me.

Like I’m never going to get to be the person I’m supposed to have been. Or myself if that’s any different. I’m that alone, doesn’t mean that my life is any less than anyone else’s as I make the best of it. It can put a lot of pressure on the life I lead now, make the decisions I make my life more important.

Failure hits harder when you have less chances to win.

My brain hasn’t got up with the idea that my body means there are less choices for me in society. And honestly, I’m not sure that it ever will. I think as a result who I am supposed to be is never going to feel reachable to me as a result. And who I’ve ended up being doesn’t feel like who I was supposed to be.

This is something that I think people understand a little more when there’s a visible change in someone’s circumstances. When the illness or disability is sudden and the effects noticeable. It’s seems like grief can be understood when change is involved. When it’s something you’ve had to deal with all your life, people seem to think you’ve already adjusted to it, so they’d be no grief involved.

But there is. And it’s valid.

Life involves a lot of grief that is hard for people that haven’t experienced it to understand. But that doesn’t make the feelings they feel less valid.

Why is it better that I watch TV alone?

On By Katy DalyIn Blog1 Comment

So I’ve scheduled this post to be added to the blog at a time, I’m hopefully asleep. you’ll understand why if you read my previous post.

But as I write this post, I’m watching a tv show, due to the whole not sleeping thing. In fact that’s probably part of why I’m still awake, but that’s not something we’re going to touch right now.

As I watch this program, I’ve stopped, started, muted and googled things many times. And this is how I generally watch tv when alone. It’s obviously not appropriate to do this when watching tv with others. When I’m doing that I’m just usually on my phone.

I think it’s a control thing. I think it’s wanting to know the future but not experiencing the emotions that come with that. And I obviously have the most control over TV when I watch it alone.

It’s a silly thing to want control over. But when you feel as if you don’t have a lot of control in your life, you’ll take any control you can get, and that includes TV. Controlling the rest of the world, the rest of my life, feels inaccessible to me. Controlling watch I watch on TV and how exactly I watch it, is not.

Sometimes getting a little bit of control back can help. And I think as long as it doesn’t hurt anyone, including yourself controlling the little things can’t be bad.

But all of this really means that it’s just better that I watch TV alone. So I can do it at the speed that I want to do it.

International Wheelchair Day 2024

On By Katy DalyIn Disability Pride ♿️, My Disability TruthLeave a comment

So today is International Wheelchair Day 2024.

And funnily enough I’ve just had my wheelchair fixed. My wheels bring me freedom, I’d be stuck without them. They are the reason I get to be a person.

But the truth is the world isn’t built for people like me. It’s difficult using a wheelchair, because of the inaccessibility around me. Being in a wheelchair takes a lot of effort and planning just to get out of the house some days. Memorising routes and hoping nothing is going to block them. Not being able to go to concerts and have the same experiences as everyone else.

But without a wheelchair I wouldn’t even have the freedom I do now. Yet growing up as was told I needed to do as much as possible, to not become “wheelchair shaped”. Despite this being my eventuality and it causing a considerable amount of discomfort to attempt to delay it.

Using a wheelchair isn’t bad. Not walking isn’t bad. Mobility aids and physio need to be given for the best outcome of the individual, and not simply to push someone towards the societal norms that can actually be damaging to them.

Wheelchairs are not bad.
Mine is a life saver

Image Description: This picture shows myself facing the camera in my wheelchair with Imogen Ava Daly sat on my right and Bella sat on my left. Both dogs are looking at the camera.
Image Description: This picture is art by @Colourblind_Zebr. It’s shows a purple manual wheelchair with the text “My wheelchair is my FREEDOM not my PRISON”, with freedom and prison written in rainbow.
Image Description: This picture shows a picture of me slightly in the distance, on an angle facing left but looking towards the camera. Bella is stood in front of me, and Imogen is stood behind me with her front paws on my knee. We are all looking at the camera.

Independence can surprise others.

On By Katy DalyIn My Disability TruthLeave a comment

And I’m not sure that will ever stop surprising me.

Tonight I let the carers in myself, as I do periodically. These were carers that hadn’t been before when I had been in on my own. and so they were very surprised.

They kept saying that it was good for my independence. But I honestly don’t like them judging my independence, and praising me for what they think is a positive step.

To me a big part of my independence is relying on others, it is being able to ask for the help that I need when I need it. As this is something I have always struggled with.

It’s important to remember that independence is different to everyone, and that despite what the word may mean, it doesn’t just mean doing things on your own.

Additionally it’s not helpful to praise disabled people for doing things that non disabled people do all the time, like opening their front door independently. This is how inspiration porn starts.

It honestly gets old that people are so impressed with me living my life. I didn’t ask for their input and I really wish they wouldn’t give it me. You would think that carers in particular would know better.

Just keep your comments about people living their lives to yourself.

Motivation, energy and disability

On By Katy DalyIn My Disability TruthLeave a comment

From experience a know that my disability means that my physical energy doesnt always match up with my motivation and mental energy to do something. I often find that when I have the motivation or the desire to do something, that my body seems to disagree with the fact that I want to do it, and I don’t have the energy to even try. There are many things that I want to do with my life that lay on the back burner because of this.

I just wish for once in my life that things would line up for me. That my body and my brain would agree on when I can do something, that way maybe I would be able to be a little bit more productive, and actually get the things done that I am try to do.

Maybe then achieving things will be something I feel like, I’ll be able to do.

There’s a hole in my pants

On By Katy DalyIn My Disability TruthLeave a comment
Image Description: Two fingers spread around a small hole in a black pair of pants. There’s also a lot of dog hair visible in the photo.

Now I’m aware having a hole in your pants isn’t a big problem, but it is problem that I’m not able to do anything about. And that makes it worse than a larger problem I could solve.

Once I’m dressed in the morning, I cannot get changed until Carer comes in the evening. The person I live with cod, undress me but not put any clean clothes on me. So I have to decide that I don’t need to go out for the day before I get them to do that.

While it would be possible for me to get more care in the day, in fact, this has been suggested to me several times. Getting another call would mean that I have to stay home or home in the middle of the day. I already have to be home for a certain time in the evening, I don’t want to sacrifice more control of my life the fact I need Carers. I don’t even like to leave the house, and that’s a whole of the story. But I really appreciate the ability to leave if I want to, and I’m nervous of doing anything that could take that away from me.

And then there’s the cost of my Care and what would happen if I cost the system too much? And while there is an issue, I try not to think about. It is something that is on my mind when considering how much help I will take from the government. I’ve seen the horror stories. And I’m not prepared to give up my babies.

Regularly needing help from others comes at a price. This price can look different for different people, but it is always there. Just be aware of this when you think somebody has it easy because they have everything done for them. I would much rather be able to do it all myself,,whenever I want, the way that I want.

I am aware that this is such a stupid insignificant problem, and those are those are the ones that annoy me most. I think because I know that if I want to disable, I would be able to solve them.

Here’s hoping that the worst problem I have today is a hole in my pants.

Be proud of how far you’ve come

On By Katy DalyIn Disability Pride ♿️Leave a comment

I just got back doing some adulting errands on my own. While out I asked for help from strangers and dealt with things not being as expected. I did this without a lot of anxiety; avoiding doing it for a long time or not getting something I wanted from the shop.

I know this might seem minor but the me from not that long ago would have really struggled with this today.

Remember to Be proud of yourself for doing the things that were once difficult, even if they felt easy to do at the time. Especially if they felt easy at the time. Younger you is smiling, you should to.