Why 15 minutes matters

On 6th Dec 2025 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.

I built this

On 3rd Jun 2025 By Katy DalyIn BlogLeave a comment

Image Description: A 4 level grey cat tree with hammock and condo.

So it’s been a while since I posted here and I don’t really have a reason for why that is apart from life did its thing.

Honestly, I can’t remember when the last time I posted was, was it after dad died? I don’t know.

I now live alone, did you know that? Isn’t that cool? That’s something I never thought I’d be able to do, just like building this cat tree independently. If I do say so myself I’m doing pretty well, the cat tree looks nice and I haven’t burned the flat down yet.

It hasn’t all been easy. Recently I had to go without my Chair, and more importantly, Imogen while I didn’t have my chair, that wasn’t fun. But I think I handled that well too. And things are supposed to be hard some of the time right?

I don’t know when I’ll next write on this blog. It might be soon, it could be tomorrow, next week or next month. I don’t want to make promises I won’t end up keeping, so let’s just say we’ll see what happens. But I just wanted to say I’m still here, life is still ticking on. And I hope if you find yourself wandering the blogs of the world, and stumble across me, you’re well.

Did you earn your disability?

On 22nd Mar 2025 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.

The worst thing about being disabled.

On 27th Feb 2025 By Katy DalyIn My Disability TruthLeave a comment

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.

On 26th Feb 2025 By Katy DalyIn My Disability TruthLeave a comment

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 24th Feb 2025 By Katy DalyIn My Disability Truth1 Comment

The rules of needing help are as follows:

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

My last concert

On 21st Feb 2025 By Katy DalyIn BlogLeave a comment

Almost a week I attended what will be my last concert, and it has taken me a week to fund the strength to write about it, due to just how automatic the experience was.

Music is a freeing experience for me, it is one of few places in this world where i do not feel constricted by my disability, where I do not feel disabled. But concerts often have the reverse effect, and they really did this time.

I went to a Dean Lewis concert, and I suppose as final concerts go it was a good way to finish a bad run. I made the mistake of going back to a venue I already knew was inaccessible to me, by this I mean that although the venue was technically wheelchair accessible, I knew the view it would provide me with wasn’t. Contrary to popular belief just because the venue in wheelchair accessible, doesn’t actually mean it will provide an accessible view to wheelchair users.

I was told previously that I would be able to go on the main floor when visiting that venue again, after my first very poor experience of it. However, when I went this time, I was told this was not possible due to there being no risk assessment of a wheelchair user being on the main floor. I found this confusing as I can’t really understand why I would have been previously given permission to do something that I was never going to be able to do due to lack of risk assessment.

I also don’t really understand why I’m more of a risk in a crowd full of people than the drunk people in that crowd are. Of the many concerts I’ve been to at this point, I’ve never once been the person that needed help of any kind. It isn’t about my safety. It is about the venues, fear of being sued. I argue that I in fact more safe to be in that crowd than many other people, once I’m in it, I do not move. And surely the people within the crowd have some responsibility for their own safety, is it not their job to ensure that they are not injured by someone in a still and unmoving wheelchair?

We really need to move past the idea of the accessibility for disabled people is just getting them into the building, that’s it’s just taking a box to say we tried. In some ways this is where the legal requirement for accessibility hold us back. People don’t actually consider the accessibility of a venue as long as it meets these legal requirements and the legal requirements are outdated and basic.

I cannot put myself through this again, I’m scared if I keep trying it’ll ruin music for me. Music saved my life. I’ll take a lot of it that’s freeing, over a little more of it that’s debilitating.

Disabled people deserve fun. And I’m tired of that being an argument. I’m tired of nice excuses, and lovely people not be able to do anything about it, and feeling bad. But nothing changes because no one sees that it should.

I just want to dance.

The venue was – The Victoria Warehouse,

First night.

On 2nd Feb 2025 By Katy DalyIn My Disability TruthLeave a comment

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.

Control.

On 23rd Dec 2024 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.

My Inaccessible Life

Tag: Real Life