Tag: Disability

Doing what you can.

On By Katy DalyIn My Disability TruthLeave a comment

I think when you need a lot of help from those around you, being able to help them can be something even more important to you than most. I don’t really want to say it feels like like paying them back, because that suggests that you should have to pay those that helped you back for that help, and of course you shouldn’t. But if I’m honest with myself, it does feel like that.

So when I’m able to help someone, I push myself to do that more than I should, and perhaps more than most would. Sometimes doing this can be to my own detriment, as was the case yesterday.

We ended up having to get a taxi part of the journey home from the concert on Tuesday. While this was in part due to public transport ending before the concert had finished. It was over a distance that I would normally be able to travel in my chair. But because of things I had done earlier that day and having thought far enough into the future, I ended up with very little battery in my wheelchair and would not have been able to make the journey.

Earlier in the day I had ran errands for a family member whose car had broken and needed things picking up. This person is not able to travel without their car as they are unable to walk long distance.

It’s a learning experience when you’ve always been disabled watching those around you become disabled. Watching how they react to it all, how they adjust to their new normal. And sometimes unfortunately how they give themselves to grace they never gave you.

But not to dwell on that. Here was something I could do for someone who has done a lot of things for me regularly in my life. I just didn’t think through the consequences of helping them.

That is honestly a really frustrating part of being disabled, when others need your help, you still have to consider what you are able to do within the capabilities of your condition and situations. Sometimes this means you are not able to do everything you want to be able to do for them. It’s one thing to let yourself down, it feels so much harder to let other people down.

So I was going to do what I could despite what it cost me. And in all honesty I didn’t even realise until it was too late. But it’s not the end of the world, I got home okay and had a great night. And I managed to help someone, so that felt good too.

I just wish that wheelchairs could be charged using USB from a powerbank. That would honestly be the most helpful solution so my wheelchair is never able to limit my independence due to its charge Maybe one day it will be possible. 

The little things matter.

On By Katy DalyIn BlogLeave a comment

Tonight I went to go see Noah Kahan and it was at a venue that was so much more accessible than last time I went to see him, and that made all the difference.

Of course if I’m honest I still wanted to be in the crowd. But at least this way I could see and I could still feel part of it all.

Disabled people deserve to have fun in environments where there disability doesn’t have a negative impact.

I have included a video below which shows the difference between the two views I had, so you can see what the difference is.

Please please please design and choose your venues with disabled people in mind. We like to have fun too!

Two wheelchair users, one bus.

On By Katy DalyIn BlogLeave a comment

It always surprises me, but it probably shouldn’t anymore, that public transport is generally only designed for one person in a wheelchair to use at a time. We don’t in fact all know each other and coordinate when we need to do things together, contrary to popular belief.

As I write this I’m on a bus on the way to pick up some medication for a family member, I like to be useful and it’s not often I can do that without actually being in the way, but today happens to be one of those days.

There was someone else that wanted to get on the bus in a wheelchair, but they couldn’t because I’m already on it. I feel bad as if somewhere it’s my fault, even though logically I know that it isn’t because I didn’t design the buses. But can you imagine if the roles were reversed?

If public transport was only designed to take one non- disabled person at a time? How annoyed would they be at having to wait for a bus with a space on all the time?

But it doesn’t matter that disabled people have to wait. It doesn’t matter that wheelchair users can never go out with other friends in wheelchairs when they need to use public transport. We almost always have to meet them at the place we’re going. We don’t get the full experince.

This is made even worse when you realise that society actually pushes disabled people together. They think it would be easier for us all to be friends at a young age, because no one who isn’t disabled should have to be friends with someone who is. But then don’t create a society where you’re actually able to do things as friends. It’s just weird to me.

Shower night.

On By Katy DalyIn My Disability TruthLeave a comment

Showers are supposed to be relaxing apparently, though they don’t feel that way to me.

Tonight I had to shower and unfortunately I ended up getting injured. That’s not really what most people think of when they have a shower. But it happens and worst of all I didn’t come out of there completely clean. I’m difficult to clean and the situation in which I have to shower makes it difficult. So to be honest I don’t like to do it often. You can see why when you understand that it’s usually a painful process. And that’s not counting nights like tonight where I ended up getting injured.

At most I’m able to shower three times a week, this is what my care package allows. But if I’m being honest even that’s too much for me. I generally only shower once a week, sometimes once every two weeks. Now don’t worry I don’t smell, unless my incontinence has been having fun, because the carers wash me daily. Whether they wash me properly is another problem. But generally it’s not so bad only showering once a week. It keeps me clean enough I think.

All this is to say that doing what’s social expected can be draining physically and emotionally, even when you have complete help to do it. So whatever you can manage is enough.

Ignore anyone else that tells you otherwise, they’re not living your life with your situation and you’re doing your best.

And yes I’m reminding myself of this as well.

Lets talk about teeth.

On By Katy DalyIn My Disability TruthLeave a comment

This isn’t something I like to talk about, but I guess here is the place that I do that.

Brushing my teeth is always something I’ve struggled with, it’d physically difficult for me to do, but I realised recently that it’s more than that.

Partly to blame I think is the fact that regularly brushing my teeth wasn’t something instilled in me in my childhood. It now feels like something extra in my day to be done, rather than something to be done as part of my day.

But I think the biggest issue if I’m honest is the fact I need help with it. At the very least I need someone to get me the toothbrush, toothpaste and some water. Needing help is strange to me, it’s not as if it’s new, but certain things are difficult for me to ask for help with. Even though I know logically that it shouldn’t be, that I should be used to asking for things that I have to do it so much. But sometimes they just look tired or busy and I don’t want to ask, even though I know I can and I should.

If I could do it myself I think it would be easier to convince myself to do it. But I can’t at that makes it harder, in the physical and emotional sense.

I guess you can’t choose what’s emotionally difficult about life.

My phone

On By Katy DalyIn Blog, My Disability Truth, Writing Prompts2 Comments

What is the most important thing to carry with you all the time?

I know how that sounds but bare with me.

My phone, the internet, and social media, it is how I access the world. There’s no other way I can do so without help, there’s no other place I can be me the way I want to.

My phone also gets me help when I need it.

It’s not unfair to say that it’s my lifeline.

So don’t judge people who live through the Internet, judge the rest of the world for making it there only option.

You will be in the way.

On By Katy DalyIn My Disability TruthLeave a comment

The reality of being disabled, and living in an inaccessible world, is there are something situations where you’ll just be in the way.

One of these is other people’s medical situations. When you want to help, you can’t. And because you still need help regardless of what is going on in other people’s life, it’s easy to feel like even more of a burden.

This post was supposed to be longer, was supposed to be about me saying that if you’ve felt this way it’s not true. But given I feel like this at the minute it’s hard for me to give confidence I don’t have to others.

Just know that despite how you feel it’s not your fault. And I know that doesn’t change the situation, but I hope that it makes you feel that little bit better.

If you disagree this isn’t the blog for you.

On By Katy DalyIn My Disability TruthLeave a comment
Image Description:
Tumblr post by – sweetsweetemo
Text reads:
“If you had a child by choice, you:
signed up for an autistic child
signed up for a trans child
signed up for a Igbq+ child
signed up for a mentally ill child
signed up for a disabled child
signed up for a child with “conditions”
signed up for a rebellious child
signed up for a kid. in any way, shape, or form of being, it’s your child, and you signed up for it.
And you are not:
the victim in any of these fucking situations for gods sake”

I don’t share posts here for debate. If you have an issue with anything shared in this post I don’t want to hear about it, it’s a you problem. Keep it to yourself.

The heat is really messing with me.

On By Katy DalyIn My Disability Truth3 Comments

So at the minute where I am it’s very hot. And the biggest pain killer I use is heat, specifically a heated blanket. But due to the heat I am unable to use it as I would, without sweating so much.

This means that I’m in more pain than I’m used to. And when you have chronic pain a change in your pain can be really difficult to deal with.

It’s really throwing me off honestly. On top of the not being able to sit in my wheelchair issue due to the cushion. I really feel like my condition is controlling me lately, rather than the other way around. It’s very frustrating.