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.
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.
I feel like I’m being lied to, and ignored a lot, simply because they do not care about the question I’m asking. I know that it’s not on purpose but that doesn’t make it easier to deal with.
It’s not over anything important, but when I can’t check these things myself, and I don’t trust the answer I’ve been given. And its like I can feel the physical irritation of the problem getting to me. I wish there was a way to make the things I can’t change not bother me.
So I’m sorry if I ask a question multiple times, but it’s just me trying to get the feeling to go away. Eventually, it’ll pass but until it does I just have to learn to deal with it.
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.
What’s the oldest things you’re wearing today?
It’s a necklace that belonged to my grandma. I’m not religious at all, I wear it for the family history rather than anything else.
When I was younger, my mum used to give it me on difficult days or days she said I needed luck. I started asking for it on days when I was nervous as I got older, as it made me feel like my mum was there with me.
When she was dying she said I could have the necklace, and I put it on then and haven’t taken it off, apart from when I had to get the chain repaired, since.
My carers were off with me this morning. They complained about things I couldn’t change and it’s really gotten to me.
It’s got me spiralling a little bit about the things in my life that I cannot change. I didn’t choose to live in a house with a garden that I can’t look after, and yet I feel like they’re punishing me for it.
I can’t change my situation and I feel guilty for it.
I don’t want to be around so many judging people, and yet I am forced to be because of the help I need. And at the minute it’s really bugging me.
In some ways it was fun. I got to watch the new Doctor Who which was so great.
But I also feel a little guilty for today. I was supposed to go and see someone who said I didn’t have to go because it was really hot here. Even though they are the one who said it was okay I still feel guilty for not going. I just really didn’t want to go out today, and it wasn’t completely about the heat though that was part of it.
Sometimes I find it very difficult to leave the house, emotionally. I just really do not want to, and get tired of forcing myself to.
I feel like the house won today, and the relief I felt about not having to go out, also came with guilt. I feel like I should have wanted to go and see them, but I just didn’t.
Anyway, if you saw them, I hope you enjoyed the Nothern Lights, I was asleep. 😂
This post is a part two of sorts to my previous post written before I the main act of the show I attended had come on stage, you can find that post by clicking on the link here.
The video to the left shows a Tiktok I created documenting this experience.
Now that I sit here after the show, I want to say more about how this actually felt. As I said in my previous post, at the time I wanted to ignore how I felt and focus on the experience of the concert, I am very glad I was able to do that. While it was definitely worth it to see one of my favourite artists, I have to admit the experience was still a difficult one for me.
The reality of attending concerts for me is a very emotional experience. Sometimes, though rarely it can go extremely well, most of the time, it doesn’t go the way I imagined. I can only think of one instance in all the concerts I have attended that I completely enjoyed the whole experience and didn’t feel like the accessibility of the venue got in my way. Most of memories of concerts are tainted by the inacessible I experienced.
I am not talking about whether or not I can see the stage necessarily, or even how close I am to it, though that can be a factor. What really gets in the way of my experiencing a concert is the elements that I have to do differently because of my disability. Whether I have to go in a different enterance, or be in a different section, though it’s usually both. In part I always feel like this ruins a small part of the experience. Depending on how bad the experience on the night is, sometimes it can feel like it ruins the whole show, though thankfully this wasn’t the case last night. That said if I am honest with myself, it was in part ruined by the access, just not completely, so I guess that’s something.
It’s a shame really, because for me music itself is a very unifying tool. It is one of the only parts of society that I feel I am able to access the same way as everyone else, to be blunt I feel normal when I’m lost in the music. So it really is sad to me that concerts can often have the opposite effect on me. That they can often make me feel more disabled, more segragated from the rest of the world. All I really want is to be able to experience concerts the same way as non-disabled people do, as part of the group, as a person.
I am not nieve sometimes, like last night, it is the building itself that stops me from being able to have this experience. In these instances I woild argue that the concert should move to a different venue, but some would say that I am being selfish for saying this. It’s weird being disabled sometimes, being told that I’m selfish for wanting what everyone else has, is it really to much to ask?
As I wrote this entry, I had to stop myself from blaming myself for being disabled, rather than the building I was in for being inaccesaible to me. Growing up disabled you learn from society that you are the problem, and while logically I know this isn’t true, it is really hard to escape from these feelings. Especially when society says that you don’t deserve to be a part of all it’s elements, like fun.
I don’t see it changing anytime soon. In a society that only just about thinks we deserve to live in it, and not if they think we might have to change it in any way for us to be included, true inclusion just seems unlikely. It just doesn’t feel like I matter enough for anyone to want me there, I’m to much of a hazzard for them, I am simply to much work. But hey, at least I’m in the building right?
When was the last time you saw a live performance?
This is the prompt for today, but as I’ve answered it before it won’t let me answer it again. I’m at one now.
Getting into this building wasn’t easy for me, it was honestly testifying. It was something I can’t be sure I would have done if I knew what was expected of me from the start.
I was essentially pulled up several flights of stairs in my wheelchair, using an old but honestly good accessibility aid. I’ve included a picture of me using this below.
As this photo shows the whole experience was terrifying, and as I write this I have to go back down again.
Knowing the artist I’m here to see, I’m certain it was worth what it took to get me in here. But if I’m honest with myself I’m still upset by this whole experience. I shouldn’t have to go through this to have fun. Fun shouldn’t be this hard. Fun shouldn’t be hard.
The anxiety of this experience is going to leave me in more pain than usual for the next few days.
I’m torn between writing more about this now, while the emotions are fresh or focusing on the fact I’m about to here one of my favourite artists live.
I’m going to focus on the music for tonight.
My Inaccessible Life 