Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
When the wheelchair accessibility of a venue is so rubbish but they won’t let me leave without making my carer leave to who likes who we were supposed to see as well so you end up sitting in the corner watching How I Met Your Mother. This is why I go everywhere prepared to sit alone in the corner 😂😢
Make of this what you will. May or may not explain more later.
And I really don’t want to.
I’m sat here in what I call my comfy chair thinking about the fact that I am comfortable, and in about an hour I’m going to be a lot less comfortable.
When you’re disabled, you often have to do things on other peoples schedule. Which means I have to have a shower or at the very least get into bed in an hour whether I want to or not. Now this is strictly true because I can say if I want to both of them.  but if I was having a shower today, I can’t have one until Tuesday. And if I say no to getting in bed it also means I’m saying no to getting changed. This means I will be uncomfortable and dirty by the time the 12 hours have passed and I’m able to get that care again.
So I don’t really see it as a choice, when the decision is so stacked against me. Do it later, doesn’t really exist for me, and on days like today that can be incredibly frustrating.
I just don’t want to move. But I know I’ll have to soon.
Sometimes I get fixated on damage in my home or dirt I can’t clean or something like that. The only way I’ve found to distract myself from it when something new happens, is to go through the old marks and damage in my head so I feel better about the new thing being less important.
Currently it’s orange juice that I may or may not have spilled on the floor. I can’t actually tell from where I am. I’m reminding myself it’s not as bad as the marks on the wall.
This is the part of disability that you might not even consider. When someone is stuck in one position in the room.
What are the most important things needed to live a good life?
I understand that this can be a complex question, because it depends what you think a good life is, but I guess that’s the point.
Personally I would have to say one of the most important things needed to live a good life, whatever you believe that to be is Freedom. Freedom can look different to everyone. It can be the safety to live independently from others, or the ability to choose what you wear, how you look and where you go when you want.
Essentially I think Freedom is defined as living whatever life you want to live, within the bounds of not causing harm to others obviously.
Everything else I can think of that someone might need to live a good life, all stems from this idea of having the freedom to live the way they want to live.
A good life is a life that makes you happy, a life that doesn’t intentionally hurt others, life doing the things you enjoy.
I know this is a vague answer to the question but I don’t really want to be more specific, as I know that a good life can only really be defined by the person who is living it. The one thing I am clear about is that you do not live a good life if your life involves intentionally hurting others. This is never a good life, just keep to your own good life, and let others live theres.
By my own definitions here I don’t life a good life, I can’t do what I want when I want it because I need help to do it, make of that what you will.
When you need help for a lot of things in life, Freedom is conditional, so in my opinion it’s not really freedom.
I don’t live a bad life, by any stretch. I live the best life I can with the situation that my life has been presented to me. But I struggle sometimes to see it as a good life, by what I truly believe a good life to be.
At least I think I did.
But my chair and my legs had different ideas. My body just doesn’t want to do today and I’m struggling with whether that means I did or do or not.
I don’t know anymore.
I think because I’m so used to my body just being against me. That I forget how against me it is daily. Until I have the days where it’s just that extra bit against me. It makes me so sad, and I know it shouldn’t.
I should be used to this crap without letting it get to me.
I’m just tired of it. Sad I miss out because of it. I guess today I just don’t want to be disabled.
Language matters. And to some, the word disabled is the wrong word to use.
Some people prefer words like “differently abled” or “different ability”, but I’ll be honest these don’t sit right with me.
To me using the word disabled is simply factual. I am disabled, while there are some things I do differently, there are things I cannot do. And I don’t think this is something I should feel bad about or not acknowledge.
I feel like those who don’t use the word disabled want to change the language to make them feel better about their disability, which is of course their right to do. But I would rather own the language.
There’s nothing wrong with being disabled. It makes you who you are and you deserve to live in the world.
Being differently abled doesn’t make you not disabled, and that’s okay. Disabled is not a bad word, it just is. And I don’t like it when people think it is, it feels like they think I’m wrong for existing and being happy with that.
I don’t really know what else to say about this, without repeating myself. But remember language changes for us, we don’t need to change for language.
Describe something you learned in high school.
I didn’t learn that it was the good thing people tell you it is.
As I’ve grown I’ve learned everyone is different. But sometimes I still feel a kind of different I wish I wasn’t. I’m trying to work on that, but it’s not linear.
What’s the most fun way to exercise?
Honestly I hate exercise.
I just don’t have the energy for it. I would rather take a nap.
Moving hurts. Why would I do more of it than absolutely necessary.
Sometimes when you’re disabled, living your life independently in an inaccessible world can be very dependent on specific pieces of technology.
Technology doesn’t know how valuable it is, and technology being technology it will eventually break. You will need a replacement eventually, that’s just life.
But just because you need a piece of technology doesn’t mean that you’ll be able to find the replacement you need for it. And what do you do when you can’t find the replacement that you need? Like anything, you adapt.
Adapting is something you have to do a lot in an inaccessible world, but that doesn’t make it easy. It can be very upsetting and difficult to do, especially when adapting involves changing a way you’ve had that works.
I don’t like to do it. But does anyone like change?
Needs must, I suppose. And so I’m trying to continue and adapt and change. To face the challenges life throws at me. But in all honesty it doesn’t get easier.
What are your morning rituals? What does the first hour of your day look like?
The carers get me changed and dressed and then I tend to go back to sleep in my wheelchair.
This depends on whether I have to do things in the day, mind you. If I have to do things that involve going out, and have a say in when they get done, I try to get them done as early in the day as possible. In this case I wouldn’t go straight back to sleep. I would wait until I’ve done what I needed to do.
If I don’t have a say in the times things need to be done, I would probably sleep until the time that I need to do whatever it was.
If I get a say in it, which because I need help to do if, I don’t always. I like to get the dogs walked as early as possible. In all honesty this is just to get it over and done with so that I can go back to sleep.
Fatigue sucks let me put it that way.
My Inaccessible Life 