Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
When the wheelchair accessibility of a venue is so rubbish but they won’t let me leave without making my carer leave to who likes who we were supposed to see as well so you end up sitting in the corner watching How I Met Your Mother. This is why I go everywhere prepared to sit alone in the corner 😂😢
Make of this what you will. May or may not explain more later.
So tonight I’m going to another concert, and when you do this as a wheelchair user it always comes with a level of anxiety, especially when I go to a new venue.
Concerts are an odd experience for me, the music can help me feel free and part of a group, while the environment can make me feel more disabled than any other environment. It’s always hit and miss.
This is a concert I’ve been to before, and last time it was amazing, but my experience was helped massively by the venue. By the fact I could go in the crowd with everyone else, and be near the front.
The last thing I want is to be at the back, I’d rather be in the crowd and unable to see, rather than in some special area. In the past I’ve been in this area and unable to see anyway. The area isn’t really about me being safe, it’s about protecting the venue from being sued in anyway and I hate being in it.
But this time I know in advance that I will have to be in it, which I’ll admit it is better than not knowing. However it’s still causing me a great deal of anxiety. I’m hoping the experience will be worth the stress that venues place on me because of my disability. But this isn’t something I will know until I get there, but I can live in hope for a good experience right.
Wish me look.
So after being out all day yesterday, the person I live with seemed surprise that I told them I would be okay to handle what we’d being doing today on my own if they wanted to stay home and sleep.
To make it clear I won’t really be on my own for a lot of the day, but because they won’t be with me for all of it, for part of the day I would be on my own. Specifically while we get to the place where we’d be meeting family.
This is a well practiced route that I do almost every Monday, when we go for a family breakfast, so I’d be fine. In some ways it’s actually easier for me to be out of the house on my own than in the house on my own. My house is just that inaccessible in parts to me. But still they seemed surprised that I’d be okay to handle this on my own.
I think it’s easy to forget when you see how much help I need on a regular basis that I don’t need help for everything. That although some things are easier for me to get help with, it doesn’t mean I couldn’t manage them alone.
Interestingly as I write this I had to call for help, but remember what I said about my house not being that accessible to me? Blame the environment for that one.
Anyway, the way they said this was like they expected me not to go if they weren’t going, and honestly that annoyed me maybe more than it should. Like I said this is something we do every week, and a few times I’ve been too tired to go, but I’ve never expected them not to go because I wouldn’t be. It’s like they forget I am an adult that can do things without them. Maybe they do? Maybe everyone does? Maybe I do? I don’t know.
There’s something else I want to add about this weekly get-together. It started years ago, and initially, it wasn’t something I was invited to, which really upset me, and on some level, I think it still does. When I questioned why I wasn’t invited, I was told they just didn’t think I wanted to go. And I don’t know if they genuinely believe that, or if it’s just what they tell themselves to make themselves not feel guilty, or which answer to that is worse.
I personally think they decided that it would be too difficult for me to get there, and so decided just not to invite me. I never questioned it because for a while I didn’t actually know it was happening. But this wouldn’t be the first time my family have done something like that. Made the decision for me about going somewhere or doing something, and so never asked me about it. They once went to a theme park when they knew I wouldn’t be home.
This isn’t something I can bring up with them, as it will definitely start more drama than it is worth. I doubt they even remember what they did. But I do. I remember the exclusion, feeling like I was too much to be included even by my own family. That’s something that I still struggle with now. I often say I don’t want to do things, if I think having me involved will make things more difficult for others. It’s not only my family that have excluded me in this way throughout my life, but it definitely hurts worse when it comes from them.
But back to today, I will be going to the family breakfast, whether or not I have to get there or back to my dad’s on my own. It will be happening. I deserve to be involved in things, I deserve to be involved in this family. And this is how I want to be involved. Plus, I really like being able to have chips for breakfast.
Just remember that if you’re reading this, know that you deserve the same from your own family whether or not they make you feel that way. You deserve to be part of the gathering, part of the memory, part of it all. And if they exclude you, it is always a choice, there could’ve always been a way to include you. That is a decision they made, it is on them not you
So the person I live with got invited to a party by a neighbour. I was also invited, apparently, but they told them I wouldn’t want to go. And I guess, it got me thinking.
I don’t know if I would actually want to go. I don’t know if that’s a fair question to be asked of me, when it feels like I definitely don’t get to make that decision.
Where the party would be I wouldn’t easily be able to get to. So I shouldn’t want to go anyway. I can’t actually work out if I want to go or I want to want to go. Decisions aren’t fair when they’re already made for you.
I’m angry that this one was made for me, but it was already made for me, before it was made. So I shouldn’t be angry, and yet.
When do I get to make a fair decision that isn’t controlled by the world around me or by my brain?
I’ll be in my room if you need me.
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.
Just don’t park on pavements.
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.
What jobs have you had?
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.
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 