Category: My Disability Truth

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.

Did you earn your disability?

On By Katy DalyIn My Disability Truth1 Comment

There’s a weird hierarchy that I’ve been seen happening within the disabled community. Someone seemed to think that they have earned the right to be disabled. That whatever they’ve been through has given them their “badge of honour” and the right to call themselves disabled.

That’s what they want, they want to divide us. To tell us some of us have fought hard to be “normal” and it’s not our fault we lost, while others haven’t even tried. The amount of ableism it takes to place the value of a disabled person, on how hard they fought against their own body is concerning.

Disability happens to us all. It’s a matter of when, not if. You are disabled enough and in the right way, however you got there. Those of you that think you’ve somehow surpassed others to earn your space, think about why you think that.

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.

You have to see the future when you need help.

On By Katy DalyIn My Disability Truth2 Comments

We all have bad days, if you’re lucky you just have a few bad hours, like I did this evening. But when you’re disabled, more accurately when you need others help, that’s not allowed to happen.

If things go wrong and you can’t run on the schedule, they’ve decided for you, they’ll make you feel bad about it. That’s the worst bit, as it wasn’t even the schedule I wanted to be on. They were running early, and I had one of those nights where everything just seems to go wrong, so I wasn’t.

There’s no room for things to go wrong when you might make other people wait for you. There’s no one understanding that just like everybody else is something you can’t control, but when you’re disabled, there’s a lot you can’t control, it’s still your fault though.

You should’ve known that your chair would get stuck on a wire, or your dogs lead will get caught in your chair. Or a random other dog would start barking at you twice in the same walk, and not really want to leave you alone. You should have known all these things would happen, before you even left the house. And plan your time accordingly so that you wouldn’t make them late. Not to make your life easier, it’s never to make your life easier, it’s always for them. The people that help you, the people you have to be grateful for. The people who think that God’s gift to earth for doing their job. They will always matter more than you do. They can have a bad day, they can run late, you can’t. Don’t you know, disabled people are not allowed to have a bad day. We’re not allowed for life to go wrong, we already cause enough trouble, we have to keep it going right, and it’s our fault when we fail.

One of the most frustrating part of all of this is that my car didn’t even run over, though you wouldn’t have known that from the way they were acting. They were still out the door before my call time even ended. But that’s not unusual, carers never expect to stay for the full call you’re entitled to. To be honest, I don’t really want them to either, it seems silly just to have them stood around when I don’t need anything. But maybe what that’s why they think that my call time as a whole doesn’t matter, because they never have to stay for it anyway. I don’t want turn into that type of person that makes them stay, but for once I’d like to not be made to feel bad for things going wrong that I couldn’t control.

Another annoying thing is despite this these are the best carers I’ve had in a long while, if ever. and still, I feel like I work more with them than they do with me. But I don’t want to risk losing them, because while I could say that’s what they deserve, I would be the one that would have to suffer. I need them, the truth is they don’t really need me.

I know to them as a job, but to me is my life, and sometimes I just wish I would respect that. Out of all of us involved in this transaction, they are the ones that made the choice to be part of it, not me. Am I really asking for too much? I don’t know anymore. I just don’t want to fight to get out of bed, or into it as was the case this time.

The worst thing about being disabled.

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There’s a lot of rough things about being disabled, we all have different and valid experiences, but I’ve realised something that I think is the worse part as I’ve gotten older.

You’re still disabled when everything else happens.

Disability doesn’t go away when the world keeps turning, whether it’s good or bad things, you are still disabled through all of it. Whether someone is in hospital, or they’re going on holiday, you’re still you. Trying to exist in a world that feels like it doesn’t really want you there, and trying to be some part of the person you feel like you are on the inside. It never feels like enough.

But you can’t say that, because then you’re making everything about you, and the nature of your existence means that you do that enough already.

You just have to keep moving, keep trying, and ultimately failing.

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.