That’s not strictly true, as I did have a few jobs in university, in situations where they are specifically looking at employing students of the university. There are only things that lasted a day though. I did earn my first and to this day only paycheck which was nice.
But I’ve never really had a job despite trying. Many jobs are inaccessible to me, and people don’t really expect me to work. I tried for awhile to fight against this determine that I would fine something to do. But when your options are already limited, and people are just turning you away because you have no experience as no one will let you try. There’s only so many times you can be told no before you end up listening.
Just remembered that not everybody who doesn’t work doesn’t work because they’ve chosen not to. Whether a person is disabled or not they might want to work they may have tried to work but it is not always that simple.
I can’t just walk into a shop and get a 9-5 to pay the bills. I’ve actually dreamed through having a job like this. A job where I am able to earn my own money and have a role in society is all I really want. But I don’t think it’s in the cars and that makes me sad. 
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 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.
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.
I suppose to answer his question it depends on what you mean by camping.
If we’re talking in a tent, I have vague memories of possibly doing so as a child. Definitely in my garden and definitely on the trampoline. But there is also a possibility that we went to a campsite to do it.
If we’re talking in a caravan we definitely did this growing up, I can vividly remember it. We also had an awning that the children would sleep in as we didn’t have the room in the caravan.
So yes. I did go camping as a child. It’s not something I do now as it’s not the most accessible activity when you’re a full time electric wheelchair user.
This time I definitely am. But telling the truth about this just seems selfish so I won’t.
It hurts honestly, when those close to me do things without considering me, even when I say it’s okay. I feel like I’m being left out, and sometimes that just really gets to me.
I know that living my life as a disabled person there is always going to be things I can’t do, there is always going to be things that aren’t accessible to me. If there wasn’t I wouldn’t be disabled. And part of me really wants to tell people that if I can’t do something they shouldn’t be doing it. But I understand how completely selfish that is so of course I wouldn’t do it. Of course I wouldn’t say I don’t want you to do that because I can’t. Why would I do that? But the truth is I really don’t want you to do some things because I can’t do it.
It makes me angry and upset, and quiet. I’m not really sure what more to say about this situation. I’m sorry that I’ve not said more. But I think I’m still angry, whether at myself or them I’m honestly not sure. I want to say I’ll write more later, but if you’ve read this blog for a while you know I would probably forget.
I’m also not having a shower tonight, and if I’m honest the definite reason behind that is because I do not want to get more in there way. I do not want to take time away from them having fun by showing, because that honestly just doesn’t seem fair to me.
Last night I slept for 12 hours so I feel ready for the concert I’ve got this evening. But knowing my luck I’ll be tired by the time actually comes around. Sometimes my own body doesn’t want to make fun accessible to me.
Though my body is not my biggest concern on a concert day. I feel better once I’m in the building and I know no one is going to try to make me leave. It’ll be worth it I know it will be, but there’s a lot of anxiety involved in going to a concert for me.
I really want to see that it baffles me that society hasn’t thought of the need to make concerts accessible to disabled people. But in order to say that I would have to be naive and forget that he just doesn’t care about disabled people. We’re not allowed to have fun.
I really just wish having fun was more accessible, it’s always so complicated, and has so many moving parts. So many that I find myself unable to deal with them and leave sorting the accessible to the person that goes with me. I just got too angry to see it with a clear head. I can’t get past the fact that it shouldn’t be this complicated to go to concerts if you are in a wheelchair. That when the venue itself is accessible, there’s no need to make it as hard as many venues do.
That said, I hope this will be a fun experience. And I actually get to meet the artist (hopefully), which makes it even better. When I say hopefully I do have a ticket to meet the artist, but whether they will actually let me do that is another question. I’ve never done this before so I’m slightly nervous that my disability might make this complicated as well. Or I should say that the venue will use my disability to make this more complicated. But I hope it will go well.
The reality is I don’t know how this will go until I am there. So I will just have to wait and see. And try to focus on the best part of all of this, the music.
I love music. It is a tool that makes me feel part of society, mostly. I feel the same as the others who listen to it. It’s only when I go to concerts that things can get complicated. But music itself is the least complicated way for me to be part of society.
My Inaccessible Life 