Tag: Disability

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. 

My last concert

On 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 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.

When you don’t like being around people but you have to be.

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One part of being disabled that people don’t talk about is the fact you have to be around people that you really don’t want to be around.

There’s no, I don’t want people like that in my life, when you need that person in your life. Cutting them off puts me in danger.

I’m not really a people person, but I’m forced to be a person that is always around people. I’m always waiting on people, waiting on them to do everything for me. To get me up in the morning, someone to make me food, to get me a drink.

And I’m supposed to be grateful. Always. It can never be to much that they’re helping me, while something I need at the same time. That just doesn’t make sense to people, when I’m getting the help I should be grateful, always.

The minute I’m questioning how they do it, asking for something some a specific way, or just having a bad and seem off when being helped. I’m not being grateful.

Did she shut the door to keep me quiet?

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I hate being disabled sometimes. I categorically hate it. It’s a visceral anger that I don’t know what to do with.

I realise recently that it mostly correlates with when I am placed in situations where I feel like a burden for reliant on others. Like I can’t change anything else, but I can be mad at myself for being in that situation. And at least that’s something, even if I know it’s not healthy. And unfortunately the person who I am heavily reliant on has an annoying habit of making me feel this way.

This leads to me feeling so broken for ever needing help, like I’m the worst person in this persons world, there biggest inconvenience. And they’re treating me like I forced them into a situation that they agreed to live in.

It’s not my disability that makes me feel like a burden. It’s always others.

The hardest part of grief.

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I think the hardest part of grief for me has been the realisation that I’m still disabled throughout it. I hate to make this all about me, in fact I try to make it not about me whenever possible. But I find myself spending a lot of time hurting over the fact that I can’t mourn those I love in the way that I want to.

I’m sorry.

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.

On By Katy DalyIn My Disability TruthLeave a comment

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.

I’m hungry.

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Early this evening I was too tired to eat so I fell asleep. Now I’ve woken up, and I’m hungry. But I don’t want to wake someone up for help.

I know I could but it feels mean. I find myself sat here waiting to catch them when they wake up for food.

It’s silly really.

I should have eaten earlier.

The email I don’t want to reply to.

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I’m actually sat here writing this post to avoid replying to the email just that little bit more. That’s how much I really don’t want to do it.

It’s a response to a previous email about something called Disability Related Expenses, which is essentially extra payments I have to make because of my disability. It’s part of what I and other disabled people have referred to as the disability tax, but it’s a lot more official. And I really have to prove everything I say, in order to get my payments towards my care lowered.

While I abstractly understand why I have to prove these costs, because I simply can’t just claim I pay for something that I don’t. In practice it’s something I hate doing.

Proving my disability just makes me feel very disabled. It makes me feel judged. Like they think I’m lying in some way that I know I’m absolutely not lying. Like they’re waiting for who I am to trip me up. To judge whether I’m disabled enough to not have to pay for care that I obviously need.

And really that’s the hard part, the fact this is all about a payment for something I need but don’t want. And as someone who doesn’t earn, it’s not something I think I should have to pay for in any way. But yet I do.

I need to write this email. I need to get it done. I just really really do not want to.

Society really is the worst part about me being disabled.