Sometimes I forget that, because when disability is your normal you don’t feel disabled.
But when the person I live with came to me tonight and asked if it would be okay if they stayed somewhere overnight in a couple of months, I wanted to say sure, because I don’t want to stop them doing anything. But my first reaction was what do I do while you’re not here?
Now I’m lucky to have someone else that can come stay with me for the night, so that they can go and do what they want to do and I still won’t be alone. But it dawned on me then that means I can’t be alone. And as I write this, I really don’t know how to feel about that.
It’s like a reminder that I’m still disabled. And people who know me who aren’t disabled might find that odd because I am very obviously disabled and it doesn’t make sense that I would just forget. But I really don’t feel that way most of the time.
In many ways, disability can be a mindset. But this isn’t the positive mantra you think it is. It can lead to a disconnect between the body and the mind, that I’ve had trouble dealing with all my life. And can make the reality of realising I’m disabled, difficult to deal with at times.
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.
I don’t know if it’s the heat, or if it’s because I’ve spent most of the day asleep. But I’m so tired today. So this post is completely a tick box post just to say I’ve written something today.
I wish I didn’t spend so much of my life tired. I wish doing anything didn’t take so much energy out of me. I wish I could live a life and just not want to sleep. But right now I’m going to sleep.
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.
Image Description: A photo of myself in my electric wheelchair being pulled up stairs. My hands are gripped tightly on the armrest of the chair.
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.
That’s sort of a lie. I was in it for maybe an hour? It just hurt to much.
There’s something not right with the cushion on the chair and it leaves the bar digging into my legs in a way that gives me pins and needles.
The immediate problem is fixable by getting out of my chair and moving the cushion forward. But there needs to be a bigger problem before I call and ask for help to fix the wider issue of the cushion moving. At least that’s what I tell myself, maybe I’m wrong and making myself suffer. I don’t know. Thanks anxiety. I just don’t feel like this is a big enlightened problem yet to get help with.
Today I just got out of my chair again, into my other chair, which to be honest has its own problems but at least doesn’t cause me as much pain.
I’m honestly tired of needing these mobility aids. Of the guilt I feel when they brake and needing help to fix them. But this is me for the rest of my life and I know that I have to accept that, it’s just hard.
I wish I didn’t need all this. I wish I could solve my own problems. To be honest I really wish I didn’t as much help as I do. Needing help consistently takes its toll. And I can’t just not have help for a while. I can’t have a brake from needling someone, from being disabled.
Honestly, I thought about writing this post for today, but I just never got around to it. So I’m admitting straight from the beginning that I’ve backdated this one a little. Sorry.
Honestly today was a great day in many ways and a difficult day in others. Emotions are funny like that.
I dyed my hair, and I really like it. It’s funny how something so simple (in theory) can make you feel so much more like yourself. I say in theory because it’s actually kind of complicated to do when you’re in a wheelchair. But it’s doable, and I love it. It’s well worth it.
But emotionally I struggled a lot today. Part of one of my chairs broke and I ended up texting my OT in the middle of the night about it. Honestly, it made me feel really guilty, as often happens when things break around me. Even if I’m not the one who’s broken them, I have a lot of guilt over the fact I can’t fix them.
I often spiral in the fact I feel like a brake or damage a lot of things. Which is tied to feelings I have of always being in the way, causing problems and making things worse. While logically I know that accidents happen, in practice they just make me feel guilty.
I’m getting my hair done over the coming days, and I’m worried.
I’m worried because I can’t follow the guidance exactly how I would like to. But I’ve tried my best. I can only wash my hair on certain days in the week and in the evening, due to my carers. But this isn’t something that someone would know about me without me saying. And don’t know how I’m supposed to bring that up to people who don’t me.
When you need help to do things, doing things when you want isn’t always an option. But I do my best.
I have to deal with the anxiety of this alongside the anxiety of having someone new cut my hair. This is the first time I will be paying for someone to come to my home to do it. As the family members that usually do it are unable to do it right now, or ignoring me.
I don’t want to risk going to a standard hairdresser as I’ve done this before and it’s been difficult due to accessibility.
Once I rang a hairdresser to ask if they were accessible, and they assured me that they were. However, when I got there, there was a step outside the building. I questioned this and their answer was that once so was inside the place was accessible. I pointed out that I couldn’t get inside due to the step. Their solution was to give me a free coupon for that Salon, the one I couldn’t get in.
So I don’t want to risk that again. This is why I’m using a mobile hairdresser. But it doesn’t come without concern for me, nothing seems to come without concern.
I have told them I am in a wheelchair, but I worry that they will just forget that. That they will say they can’t do it because I’m in a chair, or for some other reason I haven’t thought of.
Logically I’m sure it’ll be fine, but I’m still worried.
Anxiety sucks.
And I just wish that I was able to go into a regular hairdresser and get it done somewhere where I wouldn’t be a problem.
It’s difficult when dealing with a world that’s so inaccessible to you, to not blame yourself for the reason things are so difficult. Logically I know this is not my fault, but emotionally which is the side that always seems to win, its so much more difficult to deal with.
But getting my hair done seems worth it. After it’s done I just feel like I can breathe, if that even makes sense.
All this said, wish me luck for tomorrow. I honestly feel like I need it.
What is your favorite holiday? Why is it your favorite?
I used to love holidays.
But as I’ve grown up I’ve realised just how small my world seems to be compared to those around me. How many options they have to spend with other people that aren’t me, and how few options I have.
Holidays are difficult for me, not wanting to get in the way. Feeling like I’m around because people think that they have to have me around, rather than them wanting me around.
Part of me would just rather to be alone on me own for most holidays. But I can’t do that without the person I live with needing to be with me. So I’m kind of stuck going so they can go.
This is before we even get the fact that of the limited family members whose homes are accessible to me, none of them are easy for me to get in.
So I guess this one is a reminder that not everyone likes holidays. Holidays are not easy for everyone. So be kind.
My Inaccessible Life 