Tag: Independence

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

Independence is time dependent.

On By Katy DalyIn My Disability Truth2 Comments

I’m sitting here unable to sleep because I need help but I cannot get that help until the morning.

When a key part of your independence is needing help from others, you have to wait till they’re ready to help you, to be independent. So it can feel like you have zero independence at all.

Now I don’t have the emotional ability right now to argue how I’m still independent despite needing help and others are just a tool to get me what I need. I’m really struggling right now I feel so broken.

I tell myself I’m an independent person, but right now I’m not feeling that independent. I feel like a child who needs help with everything.

There was going to be more thought into this post when I started it. But I think the lack of sleep from an incontinence incident that I’m stuck waiting for help with is getting to me.

I don’t wish I could walk, it’s all the other things I can’t do because of my disability that get to me honestly. Like all the help I need. Like having to wait for others to help me. Not getting to do what I want when I want to do it.

It’s just hard right now.

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.

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.

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.

I’ve talked a lot about this recently.

On By Katy DalyIn Blog, Writing PromptsLeave a comment

What would you do if you won the lottery?

I think it’s something that everyone talks about from time to time. Even when you know it’s never going to happen, it’s good to dream.

But I don’t even play the lottery, I don’t really have the money to waste, so I’m never going to win am I.

But let’s still give the question a go.

I used to say that I would by an accessible camper van. So I could live somewhere that was completely accessible to me, travel where I wanted, and see family. So that I could stay somewhere else without having to be uncomfortable. I even used to say that I would pay for carers to be on call 24/7 and follow me around in there own camper van.

And while this idea is nice, and maybe something I would do if I won a lot of money, I don’t think it’s where I would start if I won the lottery any more.

I would start with doing up the flat I live in now. Making it look nice and a little more lived in than it is.

I would then buy some more up to date tech. A good computer, a good phone things like that.

I would then stock up the house, get some better appliances than I currently have. I would make sure rent and bills are paid well in advance if possible so I wouldn’t need to worry about them.

Then a holiday, abroad. Somewhere hot maybe, or somewhere I’ve always wanted to go, Las Vagas, maybe. Or I’ve always wanted to go on a cruise, that would be fun. Or even just to say somewhere in a posh hotel.

I would also love to try a spa, get a new tattoo, get my hair done professionally. Those types of things. Maybe I could even get a jacuzzi in the garden with a hoist so I could use it.

Maybe then a car, and learn to drive.

What I find interesting about what I would do if I won the lottery, is I would just live a more accessible life. I would just like to explore the world a bit L, and live in little more comfort.

I don’t think that makes me different from many people. It’s just the money might be spent a little differently in order to active it.

It is likely to cost me a lot more to live a comfortably life, because of my disability. Life is more expensive when you’re disabled. Added to this is it is harder to earn money, and when it’s harder to earn money, you have less of it, which makes things altogether more expensive. And the inaccessibility of the world costs money to solve.

Life is just altogether more expensive when you’re disabled. People including the government somewhat recognise this, but no one who doesn’t live this life, truly understands the cost of disability.

Every Mark

On By Katy DalyIn BlogLeave a comment

I know I’ve posted about this recently, but my sister hit my door in my chair, accidentally of course, and so it’s on my mind again.

When my walls or doors get marked, there’s nothing I can do about it. Shoddy cheap council paintwork means they get marked very easily.

My house looks horrible and there’s nothing I can do about it.

I can’t repaint, because I would need to pay someone to do it for me and I don’t have the money to do that.

I will never be able to live in any kind of home that I can be happy with. And every time I mark the wall or door or floor I’m reminded of that.

Being disabled sucks sometimes. Needing the help of others, and not being able to afford to pay for it every time you need it. Is draining.

The middle of the night.

On By Katy DalyIn Blog, My Disability TruthLeave a comment

Everything seems to go wrong at the most inappropriate time to go wrong. I promise what’s happened is now there’s dramatic that opening sentence makes it seem.

As I write this, it is nearly 5 am, I’ve already had to call for help once to get the remote control for my bed off the floor. I dropped it again, but was able to pick it up using a charger wire. Sometimes you have to be inventive when a problem needs solving in the middle of the night.

I dropped the remote for the second time, trying to look for a charger that I don’t even need. But the fact I can’t find it and I know that I had it makes me feel physically more comfortable than I already do, hence why I was trying to look for it.

Now I have help, but I have a rule that in the middle of the night I only ask for help when it is something very important. This much of a problem in the middle of the night. In other words, I didn’t think it was fair to wake someone else up for something that can wait till the morning. There’s only two things that constitute not being able to wait till the morning. One is dropping my control, as without the ability to move my bed in the night, I wake up in a lot of pain or I’m unable to fall asleep to begin with. The other is, if I’m falling out of bed, I would hope that one is self-explanatory.

Using my own rule, I felt comfortable given the time getting help. But angry at myself that I needed it so soon again after I did the first time. my experience of being disabled often seems to come with a lot of being angry at myself for things I can’t control.

I think this is why I get so distressed when I can’t find something, like the charger I was looking for, regardless of the time. I don’t even need the charger right now, I’m just frustrated that I don’t know where it is. The most annoying thing is that I know where it’s likely to be because I can’t find it. That is either on the floor where I can’t reach or caught in my bed, where again I can’t reach. It’s illogical for me to think that it is lost completely. And while I know this, my strong need to find it, seems to overwhelm me. I know this is stupid. I know that logically, I don’t need to find it right now, but still, I feel like I do.

But I think I get so distressed, because losing things, no matter how relevant they are represents the lack of control I have in my life. I’m annoyed that I cannot be the one to look for things when they are lost. Therefore losing something is even more distressing to me. These feelings are often amplified in the night, when I don’t feel able to ask for help, or when I am alone and I can’t ask for help.

I wish it didn’t bother me so much when I can’t find something, but knowing I don’t really need the item doesn’t change the factory I’m distressed by not knowing where it is. I’m trying to avoid the thought that if I was not disabled, I would be able to look for this charging right now on my own, despite the time. Logically, I know I should be thinking more along the lines of the fact that it is not my fault that finding this charger is inaccessible to me. But it’s hard to be logical, where internalised ableism is concerned.

I’m so tired. Despite how much I have slept during the day yesterday, as I mentioned previously. But I can’t sleep. All because of a stupid wire.

I am also now in more pain than I was earlier from trying to look for something I don’t really need. I don’t think this is helping in my lack of ability to sleep at this time of night.

It doesn’t even matter, at 5am this doesn’t matter, and yet. Why can’t I find it.

I am an adult.

On By Katy DalyIn My Disability TruthLeave a comment

As I write this I am at my friend’s. It is about 9pm, and my dad just called me to tell me they think I should go home. He says that it’s other people he’s worried about and not me and my ability, but it honestly doesn’t feel that way.

When I was out the other night with my sister he didn’t have this problem, and I was out a lot later. But then I wasn’t alone, so someone he views as more responsible was there.

I know he worries. But I honestly don’t think this is fair anymore.

I’m an adult. I am not less of an adult because I’m disabled. His worry for me is actually ableism.

Don’t worry I will get myself home.