Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
I’m currently waiting for the person I live with to get home. There is a chance they may not get home before my carers and I’m worried.
I’m torn, because I feel bad at them for ruining late at they know how important it is for them to be home for this time. But also I feel like because they care for me I’m not allowed to be mad when they do this.
What is it they say, don’t bite the hand that feeds you?
Well I never wanted to be fed, but I don’t want to starve.
So first of all, I want to apologise because this is another backdated post. I’m actually going to write this one and then write tomorrow, which is today’s straight after. But I think I can class this as a backdated post for a good reason.
For the first time in a really long while  I went out with some friends that I haven’t seen some of them in years, because it was one of their birthdays. It was such a fun day. And all honesty, I didn’t feel disabled for most of it. Which is nice.
Usually this only happens if what I am doing is incredibly accessible. it wasn’t. It was about accessible as everything else usually is. I’d say there weren’t many problems, but there were some. The reason I didn’t feel disabled I think because I was with other disabled people. While I’m not a fan on segregation in anyway there is something to be said about the ease of being with people who aren’t gonna question why you do things a certain way or why you can’t do certain things. There’s no awkwardness if I ask for help. I feel like I can ask for help, probably because I’m not the only one that needed to ask for help.
Inclusion is about more than just being in the room, it’s about being made to feel like you belong in the room. This is something I feel very people who are not disabled. And I feel many disabled people I just meet more than family for example.
It’s just that shared understanding. It’s just nice for it not to matter that I’m disabled for a while.
So I had a really fun day, came home and fell almost immediately asleep. I couldn’t have my Care because I’d stayed out late, but that’s not something I really want to get into on this positive post.
I’m not going to say that it bothers me when you do things I can’t do, but it does bother me.
Something are just accessible to me. even when they’re supposed to have accessible options, they just don’t, that is just a part of my life. And when that comes up like it did today, of course I’m going to say that it’s okay with me if you still do whatever it is. It really isn’t. But I’m not gonna be the reason that you don’t experience something. I’m going to minimise as much as I can how much my disability impacts what you are able to do. I’m the disabled one, not you.
But it’s going to upset me that I can’t be part of the experience. I’ve learnt though to keep those feelings quiet, to not make everything about the fact that I can’t be a part of it. I’m not sure it’s ever going to get to the point where it doesn’t bother me though. But I’m sure I’ll get better at hiding it.
The biggest problem here, other than the lack of accessibility, which should always be seen as the primary problem. Is the way I deal with this, emotionally. Logically, I know that something not being accessible to me is not my fault, but emotions make difficult. w
I would be lying if I said that it didn’t cross my mind that if I weren’t disabled, I would be able to have the experience. That I am the problem, not the world around me. And even though I have spent my entire life disabled, I know and understand internalised ableism very well. That me being the problem feels too much like the truth, that every time I fall for it, even just a little bit. And I have to convince my brain it’s wrong.
When I look at this without emotion it is obvious that my brain is wrong. It is obvious that I cannot and should not be blamed for the inaccessibility in the world me. I didn’t choose to be disabled and I didn’t create the world the way that it exists. I just live in it the same as you, the same as anyone else. This guilt, shouldn’t really be mine to take. And yet every time I start by making myself take it, and going backwards from there.
I’m hoping that eventually I will learn not to blame myself so much for things that are not my fault. That I will learn not to blame myself for feelings that I cannot control. That I will be able to validate my own feelings the way I validate others, because I deserve that same treatment and care. But I honestly don’t know that I’ll ever get there.
This is the message that I often send to the person I live with in the middle of the night to see if they’re awake.
I’m in a position where if it was an emergency, I would be able to ring them if I needed them. But there are some things that just isn’t fair for me to wake them up in the middle of the night. I’ve made a list of exceptions to only messaging them once it gets past 12 o’clock at night.
This list is short. It only includes whether I am falling out of bed in anyway or if I have dropped my bed control. I would hope that it is obvious why I would need to call for help if I was falling out of bed. While I have never fallen out of bed, well not since I was a young child and used to throw myself out to bed in order to get my parents attention. I have had my leg fall out of bed and been unable to get it back into the bed myself, this is when I call for help. The reason dropping my bed control is on the list of acceptable reasons to call for help after midnight is because I’m unable to sleep if I cannot move the position my bed is in. It causes me a lot of pain to not be able to change my position when in bed, particularly if I am stuck lying flat. It isn’t as bad if I am sat up pain wise, it’s just incredibly difficult if not impossible for me to sleep.
I’m writing this post now because I’ve just had to message them in order to see if they were awake, thankfully they were. This means that I can get the help I needed, which while it wasn’t vital it is going to help me to be more comfortable for the night. The time it was the position of my electric blanket that was bothering me, not something worth waking them for, but still a relief to have fixed.
For reasons I do not understand I need to have the same fabric on each foot or it’ll really irritate me. Preferably it’s my electric blanket as the heat also helps me with pain, but as long as it’s the same I’m comfortable ish.
Now I have my electric blanket over each foot and leg, but I’m trying to debate whether the pain is bad enough that I need to put it on. Really I should have asked her to pass me my fan as well, so I can have it on without overheating, but I forgot.
That can be one of the most frustrating things about needing so much help, is I can only have help on there say so. And to keep things comfortable between us I have to try to remember everything I need help with all at once.
But before you think the person I live with is horrible, they never actually said this to me. It’s just what I have picked up after a lifetime of needing help from others. I have to need help as little as possible and make it as easy for them to help me as it is possible. It’s probably me really, somewhere in my brain that says that. I can’t ever actually remember being told this, it’s just what I’ve always believed. I’m trying to not think too hard on why that might be.
My sleep is shocking at the moment, I feel like I’m going from no sleep to too much sleep with nothing in between. And no matter which I get, my fatigue is till the same. I’m still at the very least tired, most of the time exhausted. I often joke that I was born tired. I don’t remember ever going more than a few hours without being tired in the day.
But when my sleep schedule is better I’m able to push myself to do things and have a bit of a life. I’ve got upcoming plans that my current sleep schedule is going to make very difficult and I’m honestly concerned. But that’s just life for me.
I end up putting off plans where I can do I can sleep in the day, even though I know that doesn’t help me. I don’t want to let people down by doing things when I’m just too exhausted to pay attention, I would rather cancel.
The idea of going out of the house is rarely appealing to me. But when the fatigue steps up to the level it currently is and my sleep pattern is rubbish, it’s even harder for me to want to do anything. Having the dogs and things I can’t cancel without a lot of guilt help. But I also just have to wait until this passes, until things right themselves.
But right now I’m sat it’s 3am and I’m only now just getting tired. I have the chance of plans tomorrow but I’m honestly debating whether to cancel or not so I can just sleep some more. I know it’s not nice and I should just go out. But I just don’t want to, at least I think I don’t want to. I guess I’ll decide tomorrow what I’ll do.
I hope you’re not awake at 3am if you’re reading this.
Today I slept pretty much all day again. I’m hoping that’s it for this current bout of fatigue.
I actually feel awake right now, but I just hope how much I’ve slept in the past two doesn’t stop me sleeping tonight.
Fatigue is really annoying. My energy levels doesn’t match how much I’ve slept and I’m almost always tired. Apart from right now, it seems.
Okay so this is backdated. You can be mad at me all you want, but this is my blog.
I’ve done the bare minimum of the things I need to do and then slept all day, them all night, hence the lack of a post. I wish I felt like I’d slept for it, but no such luck? That’s fatigue for you.
I’m sat here waiting for food, and I can feel the fatigue kicking in.
Hoping I’m going to have the energy to eat my food. I’m so tired but I have food and TV related plans this evening.
Fatigue is just blatantly irritating me right now. I slept. I shouldn’t be tired.
My life is a job for other people, and I understand I’m struggling with the reality of that right now.
I’m tired of other people thinking they get to judge how I live. But unfortunately, they do. That’s what happens when you need help. People get a saying in your life places they shouldn’t get. It’s not fair.
I really don’t want to deal with this. part of me attempted just to not answer the phone when it rings next. So that maybe I never have to deal with this.
I really wish people making these decisions, the people judging my life, understood what it felt like to have a random strangers do that to them.
This is making me not want to do anything, to never leave my room. But I still have things to do, because whether they like it or not, I still have a life.
I’m so tired of this. I’m tired of being disabled. Tired of being judged for being disabled. I’m just tired.
I feel like social services are trying to make me choose between something I really do not want, but I need. And something they think I don’t need but absolutely want.
No one tells you about the times you know what you want, but you can’t do it. I guess that’s not a reality many people understand.
It’s not even a choice.
They get a window into my life, that everyone else gets to keep closed. And they’re using it to judge me.
I don’t like it. I just want them to leave me alone.
I can’t do this again.
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.
My Inaccessible Life 