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.
Part of being disabled (at least for me) is that I have to trust what people tell me. And for reasons I still don’t understand, they often lie to me.
It’s not big lies, usually. It tends to be just telling me something is washed, or clean, or has been picked up when it hasn’t. Or maybe they looked somewhere for something it’s not there, but when I and look for it it’s very obviously in the place where I said it was. Occasionally the lies are a bit bigger, being told a place is accessible when it isn’t, or being lied to about what the accessibility of a venue is like.
I just don’t understand why people don’t tell me the truth. While the truth would still be frustrating, it’s not more frustrating than a lie. When you rely on people to help you, being lied to is a lot worse than you might realise.
It makes it hard to trust people, when you don’t know if they’re lying to you. And you have to be able to trust people when you’re disabled, my life wouldn’t work if I couldn’t trust the people that I need help from.
But even when they lie to me and I know I can’t trust them, I still need their help. And that can be hard to live with emotionally.
I just can’t really understand how hard it is to tell people the truth.
And I really don’t want to.
I’m sat here in what I call my comfy chair thinking about the fact that I am comfortable, and in about an hour I’m going to be a lot less comfortable.
When you’re disabled, you often have to do things on other peoples schedule. Which means I have to have a shower or at the very least get into bed in an hour whether I want to or not. Now this is strictly true because I can say if I want to both of them.  but if I was having a shower today, I can’t have one until Tuesday. And if I say no to getting in bed it also means I’m saying no to getting changed. This means I will be uncomfortable and dirty by the time the 12 hours have passed and I’m able to get that care again.
So I don’t really see it as a choice, when the decision is so stacked against me. Do it later, doesn’t really exist for me, and on days like today that can be incredibly frustrating.
I just don’t want to move. But I know I’ll have to soon.
What countries do you want to visit?
If the truth be told, I’m struggling a lot with the freedom that others around me have that I do not. Call me selfish or self-centred, but this is my place to tell the truth, is it not?
I feel like every new accomplishment that those around me make, is a stab in the heart, a reminder of what I will never be able to do.
Sometimes it feels like everything is that. Every party I cannot attend, every mess I cannot clean, every drink I cannot make for myself. Sometimes, it’s really hard to exist in the world when it feels like everything I can not do is everywhere.
For that reason, this question is not reasonable or sensible to me. It simply doesn’t bother thinking about it because it will never happen.
That said, I would love to visit America, and perhaps Malta.
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 today I’m set up to be on my own all day. I have my coffee and my hot plate, which I’m counting as an accessibility aid, and should really do a post on. But I have everything I need. I think.
And that “I think” is the real concern. I have to think not only about the things I need in the moment, but I anything I may need for the rest of the day while I’m on my own. And I don’t always get it right, I usually forget something. I forgot my fan today, but that’s nothing major.
You have to be more organised when you’re disabled. You just do. You have to try and think ahead about the immediate future all of the time. You’re the one that suffers if you’re not organised enough.
I’m far more organised that people might realised, it’s just organised chaos, to be honest with you. I’ve set things up so they work for me, even if it looks complicated for you. And because I’m not set up as far in advance as some they may not realise just how organised I am.
Today is just about being ready for today, and that’s enough for me.
I know I’ve posted about not being able to be on my own, but today is a day where it wouldn’t be fair to the person I live with to not be on my own today. They wouldn’t be able to do what they wanted to, and I really don’t want to stop them living their life.
Sometimes me being alone is about other people, and it’s just a risk I have to take.
I spend a lot of time just scrolling on various internet platforms, and if there’s one thing I’ve learnt, it’s that wealth is relative.
Seeing people complain about the price of things they’ve inquired about, that I don’t even have the money to look into, is a wild experience. The price of getting a swimming pool in your garden has gone up, oh I feel so bad for you.
Sorry, I know this is a very cynical post. And while I’m a strong believer in people’s right to do whatever they want with their money, sometimes the reality of this is just difficult to witness.
I think it’s because I know that society is going to keep me poor. Don’t get me wrong I live comfortably, but I am never going to have the kind of disposable money needed for a pool. I know those that do have the money have worked hard for it, and they deserve it. But I’m not even getting the chance to work hard to change my situation. And sometimes that just gets to me.
I know compared to some I have a lot of money, but compared to others I know, I have nothing. And I feel like I’m constantly torn between it could be worse and why isn’t it better.
I don’t know where I was really going with this post, as it goes against what I believe to differ that people couldn’t talk about there problems just because it could be worse. I guess I’m just airing my own problems and that’s that.
If it wasn’t obvious, if I win the lottery, which I do not play, I will be getting a pool, or a jacuzzi.
What are the most important things needed to live a good life?
I understand that this can be a complex question, because it depends what you think a good life is, but I guess that’s the point.
Personally I would have to say one of the most important things needed to live a good life, whatever you believe that to be is Freedom. Freedom can look different to everyone. It can be the safety to live independently from others, or the ability to choose what you wear, how you look and where you go when you want.
Essentially I think Freedom is defined as living whatever life you want to live, within the bounds of not causing harm to others obviously.
Everything else I can think of that someone might need to live a good life, all stems from this idea of having the freedom to live the way they want to live.
A good life is a life that makes you happy, a life that doesn’t intentionally hurt others, life doing the things you enjoy.
I know this is a vague answer to the question but I don’t really want to be more specific, as I know that a good life can only really be defined by the person who is living it. The one thing I am clear about is that you do not live a good life if your life involves intentionally hurting others. This is never a good life, just keep to your own good life, and let others live theres.
By my own definitions here I don’t life a good life, I can’t do what I want when I want it because I need help to do it, make of that what you will.
When you need help for a lot of things in life, Freedom is conditional, so in my opinion it’s not really freedom.
I don’t live a bad life, by any stretch. I live the best life I can with the situation that my life has been presented to me. But I struggle sometimes to see it as a good life, by what I truly believe a good life to be.
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.
My Inaccessible Life 