Tag: Cerebral Palsy

Why 15 minutes matters

On By Katy DalyIn My Disability TruthLeave a comment

I got home 15 minutes before the Carers were due, they were early, they arrived as I did.

The time I go to bed is already a compromise for me. To compromise further is frustrating. Not least when I haven’t planned for that compromise.

It comes down to the fact that no one expects disabled people to have plans. Our time is not respected, yet we are eternally supposed to respect others.

You wouldn’t like the amount of compromises disabled people have to make, on a daily basis just to live our lives. Never mind so that we can go out and have fun.

This wasn’t even the only compromise I made today. I sat on my own poo for hours. I was damp most of the day. And yes, I still had a great day. I don’t regret doing it. But it did cost me. Sometimes I just wish people would respect that.

The cinema is interesting, I can’t sit directly with those that go with. And yet today the seating put them out a little, they got to experience what I do every time we go

If people could just experience small amounts such the reality is that disabled people have to deal with I think they might look on our situations differently. Maybe that is too much hope. I don’t know.

I just wish I could have one day that didn’t feel like it was in some way, but my disability. A day where I could do what I want whenever I want to. Without having to consider other people, at every single point.

Fail

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Being a disabled child is kind of like bing the gifted child in school. Everything you do is amazing, but at some point it switches to being not enough, and you don’t know exactly when.

You feel like you need to live up to invisible expectations you’ll never meet. Even if you can accept the things you’ll never do, all it seems to do sometimes is put pressure on the things you will achieve. You have to be better. You have to not fail.

Mistakes aren’t allowed to happen. Even if it’s just the voice in your head telling you that you’re not allowed to fail.

Do I wish I could walk?

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I’ve been asked many times in my life if I wish I could walk, I feel like I’m supposed to say no, like her answer would somehow support the validity of disabled people’s existence. But in reality is not a question I can answer that simply, it’s just a lot more complicated. You’re asking me if I wish I could do something that I’ve never been able to do before, something that having the ability to do would change my life beyond recognition, and I’m honestly not sure how I feel about that.

I don’t wish I could walk right now, right now I just wish I could find the battery for my TV remote.

Early today, I wished that I didn’t feel like it was my fault that my family’s plans ruined. Even though logically, I know inaccessibility is to blame and not me, sometimes it still feels like my fault.

Maybe tomorrow l’ll wish I could walk, or maybe I’ll just wish I could clean my own floor. Who knows?

Right now, though I just wish that I could sleep.

I can do a lot more than I think I can.

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What is the last thing you learned?

Life is weird at the minute, in many ways it’s very good, in others it’s so hard. I’ve been living independently for the last month, and that has been an experience.

I have learnt that I can do a lot more physically than I thought I was capable of, to not only look after myself but also my babies. I have learnt that I can live a life I’m comfortable with, at least to a point, and I think sometimes that s all you can ask for.

I have learnt that you can make the best out of difficult situations, while respecting the fact they’re difficult.

I have learnt that sometimes you’ve got to just try.

Stuck.

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Being disabled involves a lot of trusting others, no matter how many times you are let down by people, they’ll be something else you need so someone else you have to trust.

It doesn’t stop hurting or making you angry when you are let down.

I had a freezer which the cat decided to poop behind, I asked someone to check if they had pood there, they said they hadn’t, they did. And now it’s been so long, there’s nothing I can do about it.

In many ways, I don’t like this house, but there’s nothing I can do about it. What I want is pretty simply, but pretty simply things seem impossible when you can’t do them yourself.

The rules of needing help:

On By Katy DalyIn My Disability Truth1 Comment

The rules of needing help are as follows:

  1. Always be grateful. 
  2. It’s on there terms not yours. 
  3. Say please and thank you for every little thing. 
  4. Remember as much as you possibly can about the things you need help with all at once. 
  5. Always be grateful. 

No one talks about the rules of needing help, they only seem to exist when you need a lot of it. That help is almost always given on the condition of those giving it, they’re doing something for you after all. If you’re lucky they’ll ask you specifically about the type of help you want, exactly where or how you want something doing. You basically have to be a god to have a say in when you get it done. You don’t get something done how you want and when you want it for free, being unable to do it yourself doesn’t matter. 

Did you know that bigger tasks are comprised of a lot of smaller tasks? Sure you want that moving, but you also need to know what you going to do with the other thing you need to move out of the way to put it where you want. They’ll have to move that as well, and deal with the rubbish. Get ready to be thankful for each individual step. 

Even if it’s there job, to do the same things they’ve been coming to do daily, watch they don’t randomly want a thank you out of nowhere to make themselves feel good. Give it anyway, just in case. I know this sounds a little extra, but think about needing help for a lot of things and having to thank someone every time, I promise you it gets old fast. It’s not that I’m not grateful, it’s that everything becomes something someone else is doing for me I remind them of it, my existence becomes about others helping me. 

On that note, remembering that others are helping me, means I go out of my way to try and remember all the things I need help with at once. This makes it easier for them to help me, and makes sure I get all the help I need. But if I’m honest with myself it’s more about the first part than the second part. No asking someone for something when they’ve just sat down, even if that’s when you remember. Side note though, don’t ask them for to much, then you’re just being to needy, it’s up to you to find the right balance there. 

And lastly, again, always be grateful. No one wants to help people that are ungrateful, and when you need a lot of help you have to be nice enough so people want to do it. You’re the one that suffers if they don’t, if they just decide to say no. Don’t risk it. 

First night.

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Tonight is my first night in my home alone.

My sister, who I’ve written about here before but tried to be vague with, has moved out. She was my carer but is now pregnant and therefore can no longer do that. In order for the flat to be accessible to me it is also cannot be made safe for a baby, so she had to leave.

It’s been complicated, but I would be lying if I said I wasn’t relived that I am alone now. Which is weird because I didn’t expect this level of relief, if I’m honest. I thought I would be more anxious. But instead I feel good. And the house isn’t even completely mine yet. I’m looking forward to how I’ll feel when it is.

Chocolate

On By Katy DalyIn My Disability Truth, My WritingLeave a comment

What snack would you eat right now?

At least that’s what I said even though it wasn’t really what I wanted. What I actually wanted wasn’t even food, but a lot of the time I don’t feel like the things I want are important enough for me to ask for. \

What I really wanted was for my little girls polar bear teddy to be moved so that it sits over her urn correctly. I don’t think really that’s too much for me to ask for, but I know that the person helping me will think that it is. So I felt I had to make up something more acceptable that I needed there help with, like the fact I wanted some chocolate.

That is one thing I’ve learnt after having a lifetime of help from others, people will judge you for the things you need help with. They might still do the things you ask them to do but they will be very strange about it, and if you ask for to many things that fall into the category, they will simply choose not to help you anymore.

When you need a lot of help from others, you have to have your life run by them. It all ultimately comes down to what they will actually do for you, if they say no, then you are stuck.

I don’t think people really understand what that is like until it happens to them. It is really hard to grasp what it is really like to have everything in your life controlled, and as a result at least in some way judged by other people.

It’s difficult to believe I have a right to have a say in anything in my life, when I know anything ultimately comes down to others. That is why I struggle when people ask me what I want in any situations, because it just feels like that ultimately doesn’t matter.

Anyway, as for now I have the chocolate, so I’m going to eat some now at least.

Control.

On By Katy DalyIn My Disability Truth1 Comment

I know I’ve written about control before, but a lot of my life feels out of control right now, and the little things are really throwing me.

I just really want to be able to make my own decisions in my life but that’s not something you’re able to do when you’re disabled.

All I really want is not to have strangers in my house, and yet they are, whether I like it or not. I don’t have control of what happens in my own home or life. It’s getting harder and I’m trying to be big about it, because it’s Christmas and in all honesty I have to be the bigger person here. But it’s so hard.

I just want my space. I just want control. I just want not to be disabled in my own space.

Please just ask me. That’s all I’m asking.

Living alone.

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So first I want to apologies for my absence. It feels weird to continue life after losing someone close but life continues to go on whether you like it or not, so I’m trying to get back into this.

So the person who I live with is pregnant, and they are looking at moving out. So that leaves me at least eventually when they can find somewhere to live, living alone. And while there is no time scale on when this will happen, I’m still trying to plan for when it will happen. For whatever living independently is going to look like for me.

But living independently for me also means living with a dog, I can’t imagine my life without my babies. But one of my carers is very concerned about my ability to manage and in all honesty it’s getting on my nerves now. I’ve not even started trying and she’s already expecting me to fail because I’m disabled, I just don’t think that’s fair.

Sure it’ll take some working out, but I can do this. And I’ve got time to work it out. The only problem I can see is that she sometimes goes to the bathroom in the kitchen in the night. This is something I can clean up once I’m up, but obviously I won’t be up until the first time the cares have been in the morning. And if it really bothers them they can get stuff ready including water the night before, the bathroom is through the kitchen, so they won’t have to go through the kitchen until I’ve had the chance to clean everything.

I literally cannot think of another issue with having her that I can’t solve.

Any anything that might be a little more difficult is just worth it to have her, to live with her, to have my baby.

I deserve comfort and love. And a chance to live my own version of independence and for me that includes living with a dog. I don’t think that’s unfair, even if she sometimes goes in the house. It’s not like I have no way of cleaning it at all or I’m asking them to do it.

Anyway I have time to sort this. I just wish people would leave me to my business, and at least let me try before they’ve decided I’ve failed.

There’s a lot of change in my life lately, none of which I have been able to have a say in. And it’s very annoying to have people judge how I’m dealing with it all, when I’m just trying to do my best.

Image Description: A picture left to right of my yellow Labrador, brown and white caviler King Charles and grey cat all lying or sitting on my bed on a blue blanket. Behind them is two asexual flags on the wall.