I have been looking at getting some work, mainly because in all honesty I just want something to do with my time and a little extra income would be nice. But I do not have the ability, the energy, or the opportunity to work a full time job.
So I have to be sure that any work I find must not cost me the benefits I receive, as I need them to ensure all bills are paid. But they don’t make that easy.
Working within the benefits system is just so complicated, that yet again I feel like it isn’t worth what it will cost me, for what I’ll get out. It’s just too much.
It doesn’t make sense really, a system that claims it wants to get people into work, to be so difficult to navigate.
I wish I could just go and work in a shop, that that would be something I would be able to do. That I could just have something to do that would bring me enough income to be self-sufficient. But my disability, society, has to make things so much more complicated for me
I honestly don’t know why I keep trying, and yet I do.
But people who do not know better call me lazy, say I have not tried, when all I have done is try. I’m tired of trying.
I’m tired of not being able to work.
I’m tired of the system being so complicated.
I’m tired of it all being down to me to try, when it is clear others want me to fail, so I will.
Image Description: This picture shows a silver car parked by a green hedge blocking the pavement completely.
The second picture shows a blue car parked by a green hedge, blocking the pavement completely.
These pictures were taken earlier this week in my local area.
They show something I have experienced regularly throughout my life. Cars blocking payments and forcing me in to the middle of the road.
Now of course pavements exist because roads are not safe to be walked in. Even less so when you are forced to stay in the road due to inaccessible pavements. Here the payments were made more inaccessible on both sides and so I had to stay in the road.
Without drop curbs streets can become inaccessible very quickly to me, pavements do not simply become inaccessible to me when they are blocked my vehicles, they become more inaccessible. Life becomes more inaccessible to me, it becomes that little bit harder.
And when I raised this issue in my area, I was told I was being selfish. I still do not understand why it is selfish for someone to want the same rights and access to the world as everyone else. How is it selfish to want the same?
I was also told that the person who cares for me should be helping me deal with my issues and I should not be doing it myself. I did not think that I needed saying but as it apparently does, you cannot suggest that a disabled person needs help simply because you don’t like what they are doing. I’m allowed to exist and do things others do not agree with even as a disabled person. To suggest otherwise is insulting.
So I’ve recently attended a friend’s birthday meet up. I get invited yearly, but usually can’t go, this year I’m was very happy to be free. And I have to say what a relief it was that they are also a wheelchair user.
I know it’s a horrible stereotype that disabled people should only have disabled friends. But it just makes things so much easier. I know that when we do things together it’s going to be accessible.
I wasn’t worried in the slightest about how accessible the day would be. I even went happily to somewhere I had never been before, something I wouldn’t normally do. If I was going somewhere completely new I would do a trial run of the area to figure out both how to get there and how accessible it is. But I didn’t need to do that here, and that was such a relief.
They even agreed to meet a few of us on the way to the place somewhere that we knew, including myself, to go to the place together. How nice was that?!
I spent a day not feeling disabled, not worrying about needing help. I was still slightly insecure over my incontinence issues, but as I got more comfortable in the day it was easier to deal with. But overall it was such a fun day, I was so comfortable and just got to be me. This doesn’t happen often.
This is why it’s easier to be around other disabled people, around other people that understand what it’s like to be you. It’s so nice.
Other people need to learn to be more inclusive and society needs to be more accessible in order to change this in anyway. Having fun shouldn’t be stressful, and for once it wasn’t.
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. 
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.
So last night I went to another concerts and in contrast to my experience at my last concert, this one was very accessibility.
Image Description: Shows my hands and the person I was with touching the barrier at the concert.
While some others people at the concert didn’t like it that I was there and took up a bit more room, I honestly don’t care. I deserve to be there and take up space.
I was not a danger to anyone there as I have been previously told I am. My safety and there safety wasn’t compromised. Maybe this would be the case in a heavy metal concert, but dokt worry I just won’t be going to those.
This was a life-changing experience for me, not only the concert, but to simply truly be part of a crowd of people. Concerts are about more than music.
I just want to be able to experience concerts like everyone else, and I don’t think that’s too much to ask for. I just wish it wasn’t so hit and miss as to whether I get to feel truly included in experiences just because I’m disabled.
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.
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.
My Inaccessible Life 