Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
Where do you see yourself in 10 years?
The chances are things won’t be any different for me.
I tried to change them, and it just didn’t work. I don’t think I can keep trying.
My life isn’t terrible. But sometimes it feels like it lacks purpose. I feel like I’m stuck in this life and there is nothing I can do about it.
I know I’m lucky to have problems with going to concerts as a disabled person. As that means I’m in the position to both financially and physically to be able to try and figure out how to get myself to a concert. But in the accessible world that we live in this doesn’t make it easy.
One of the caveats of going to a concert if you are disabled person is too alert the venue that you will be going to that you are disabled. But this is not a straightforward as it seems.
There is often unlimited number of spaces for those in wheelchairs or with other disabilities. Sometimes, depending on the venue, this can actually make sense. But more often than not numbers are limited to make things easier for a venue. To ensure that they take a box in the best way for them, rather for concertgoers.
What really bothers me personally is the fact that venues will not allow myself to go in the general admission area when it is accessible to me. They simply say no. I am a health and safety risk.
They don’t actually care about my health and safety or anyone else’s health and safety. They simply do not want to get into trouble if someone were to hurt themselves on my wheelchair. Honestly, that feels like a them problem. But they insist on it making it a me problem.
This is even harder when I don’t feel disabled despite how disabled I may look. I don’t want to go in the special area. I’d rather be in the general admission area and not be able to see then be in the special area with a perfect view. I want the proper concert experience and I think that I deserve that. I don’t think it’s too much to ask for. Don’t even get me started on the special treatment that some disabled concert viewers believe they deserve. I’m not talking about the separate area. I understand why some people might need that. That’s why I think it should be an option, not a necessity. But someone interrupted perfect view, as if that is realistic of a concert. I’m not just really annoys me.
The process of getting accessibility arrangements for a concert can feel like you’re asking of venues permission to attend. Something that disabled would have to do.
For this reason and for the idIocracy of the system, I tried to stay out of the finer details of organising my access to concerts. I really hate it. I know that I’m going to get too angry at the whole thing and not be able to deal with it properly and sensibly.
Concerts are a polarised experience for me. They even make me feel completely included and part of society in a way I don’t feel anywhere else. or extremely disabled, very in the way as I don’t belong there at all. There seems to be no middle ground. And yet I keep going because I want the good experiences. I deserve the good experiences, I think.
As I write this post there is a chance I may not be able to go to an upcoming concert that I already have tickets and VIP meet and greet for. This is due to aforementioned bizarre system of accessibility. I’m honestly trying not to think about it because I really want to go to this concert. And I’ll be heartbroken if I can’t.
Anyone reading this that may think disabled people get things for free because of schemes like companion tickets. If you’d rather deal with the things I have to deal with in order to get the free tickets you’d be welcome. I would swap in heartbeat. I would trade all cheaper tickets I’ve ever ever got just to attend concerts as a normal person. I just want to sing and dance.
What’s the most fun way to exercise?
Honestly I hate exercise.
I just don’t have the energy for it. I would rather take a nap.
Moving hurts. Why would I do more of it than absolutely necessary.
There are many variations in the definition of Asexuality but my preferred understanding is that those who are Asexual experience sexual attraction on a different scale to allosexuals in society. This includes Demisexuals and variations in feelings of sexual attraction that Asexuals can feel.
Speaking personal my Asexual journey was very difficult. Mostly because I didn’t want to live up the dangerous stereotype of a disabled person not being interested in sex.
Eventually after exploring the sub labels of Asexuality I found a label that fit too well to ignore. Sub labels exist to be tools to help you describe who you are or your experiences, not to limit yourself to definitions of words. For me they are life changing.
Happy International Asexuality Day to all my Ace Aces out there. You’re valid. You’re seen. You’re not broken.
🖤🩶🤍💜
Sometimes when you’re disabled, living your life independently in an inaccessible world can be very dependent on specific pieces of technology.
Technology doesn’t know how valuable it is, and technology being technology it will eventually break. You will need a replacement eventually, that’s just life.
But just because you need a piece of technology doesn’t mean that you’ll be able to find the replacement you need for it. And what do you do when you can’t find the replacement that you need? Like anything, you adapt.
Adapting is something you have to do a lot in an inaccessible world, but that doesn’t make it easy. It can be very upsetting and difficult to do, especially when adapting involves changing a way you’ve had that works.
I don’t like to do it. But does anyone like change?
Needs must, I suppose. And so I’m trying to continue and adapt and change. To face the challenges life throws at me. But in all honesty it doesn’t get easier.
Which aspects do you think makes a person unique?
I think the most unique thing about humans is the way we experience emotions.
The fact that different things make us all angry, sad, scared, loved. While you may understand someone’s emotions it can be difficult to understand what triggers them, and impossible to understand how they feel them. And I honestly find that extremely fascinating.
I firmly believe that nobody’s experience is exactly the same where emotions are concerned. But if you can try to understand someone’s emotions in a situation you may be able to understand more about them and who they are as a person.
I feel like emotions, the emotions of others, are a big part of how I understand the world around me. I think this comes down to my disability, and the fact that I cannot understand the world completely physically. No matter how I hard I try, physically there will always be things that I miss due to my disability. But emotionally I am able to have a more complete understanding of the world around me. Man made ablesim doesn’t exist in the emotional world.
But just because I understand the world around me better through emotions, doesn’t mean that my emotions are easier to deal with.
At the minute I am dealing with anxiety over doing something that I know is important but scares me because it involves a phone call. I hate phone calls. No matter how important I know they aren’t I don’t want to make them. Annoyingly sometimes I get the confidence to make the necessary phone calls, but of course this never lines up to when I’m actually able to do that. And when I am able to do it, my anxiety acts up again.
What I can be sure of is my emotions don’t like me. But maybe that’s part of what makes me a unique person.
I can’t avoid them forever and I know that, when I’m with them I don’t even want to.
But when I’m on my own, thinking about meeting with people, leaving the house just seems like to much. It’s always worth it in the end, and locally I know that, but it doesn’t make it easy.
I don’t know if this anxiety comes from growing up disabled, or if it would just be a part of me anyway. It’s impossible to know having grown up disabled, which parts of me or my experiences would be different if I wasn’t disabled. But I suspect or maybe some part of me hopes, that it would be.
Growing up in the world, that is an accessible to you, can often feel like you’re growing up in the world that was made specifically to be inaccessible to you. Your existence in that world is nothing more than an annoyance to those around you. That’s a hard thing to deal with every day of your life for the rest of your life. It’s one of those feelings, that’s always there, even though it’s usually in the background and I can ignore it. but I do have a feeling that the residual existence of this feeling is what causes the anxiety that I’m left dealing with at the moment.
Either way I’m stuck what I have now. And let’s just say that’s a dislike of being around people, and sometimes even leaving the house.
I really wish I didn’t feel that way, that I could just go out without feeling like I didn’t want to. That I could want to go out.
But either way I will, and I know, I will have a good time when I do it. It’s just the feeling leading up to it, the anxiety, the fear of being judged, that I have to learn to deal with.
Sorry people. I’m trying.
Sometimes I spend a lot of time thinking about what my life might be like if I wasn’t disabled. The life I may have been able to live if things were different, if the world that I live in, became accessible to me.
It’s nice sometimes to let my imagination wander, but I do wonder if I do it to much. I do wonder if I spend to much time thiking about what could be, and if it causes me more harm than good. No amount of time thinking about things maybe being different is actually going to make the world accessible to me. No amount of staring at a steps is going to turn them into ramps. This is paraphrasing of a quote by Ali Tanaka, if you want to look into it more. No amount of focusing on not being disabled, is going to make me not be disabled. But the world is hard, and sometimes you end up there.
I know that logically I need to focus on my reality, focus on today, on where I am now. To make the best of a bad situation, as it were. And some days I can do that no problem, some days I know my life relative speaking is pretty good. Other times I’m really struggling with the idea of existing for the rest of my life as me.
I’ve tried to do something with my life, to make the best of it. But there’s only so many times you can fight against the inacessability of the world around you, before you wonder why you even try. But I deal with things the best I can, as we all do.
The funny thing, that isn’t really funny, is how I get judged by people who don’t know me for how I deal with life. A post like this would be called to negative, even though ofren it’s more real than the positivity I feel forced to disaplay to the world. Honesty itsn’t something people tend to want out of you when your disabled.
When I started this post I knew where I was going with it, but the more I have written, the less I have been sure. Sorry, I’m trying.
It may be a hodge assumption on my part, but I truly believe we all do irrational things from time to time. Like checking the front door is locked, or in my case the same spot on the floor is clean.
Just because you’re disabled, and doing these irrational things might be more difficult for you, doesn’t mean it takes away the desire to do them. I wish it did.
I sometimes wish I didn’t want to do the difficult things in life and then maybe my life wouldn’t feel so difficult. But in reality it means that I would have to do not want to do almost everything. Even then it doesn’t mean that I wouldn’t experience these feelings again. And I know no one can live a life and not do anything.
I want to check that the same spot I watched my the person I live with clean on the floor is clean, but to do that I need her help. I need her to put the cleaner in reach, and of course she asked why I wanted this. So when I told her the truth she got upset with me, as if I’d accused her of not cleaning it properly. This isn’t what I was doing. It’s just annoying me, and I would feel better if I could check it.
If I wasn’t disabled, or to phrase it from happier me, if my home were more accessible. I would be able to do this without asking for her help, and so I wouldn’t annoy her. But it isn’t so I have annoyed her.
Sometimes I just want to do things for myself, but that is almost never possible when you’re me. That really gets to me sometimes. To be honest it makes me feel like my own existence is inaccessible to me. But this isn’t the first time I’ve experienced this, and I don’t think it will be the last.
This blog is honestly one of the only places I feel truly free, and as in control as possible.
I’m going to try and do the floor now, wish me luck.
After writing this post last night ready to post this morning I discussed it further with the person I lived with and they cleaned the floor for me, meaning that I didn’t need to do it myself. I have some thoughts about that that I wanted to share as well.
So I didn’t have to clean the floor myself, which saved me physically, but I feel like having someone else do something for me again has had an emotional impact on me. I know I could have done it myself if I was given the chance, but sometimes when you visibly struggle doing something, people don’t want to give you the chance, I think that’s what happened here. They meant well, but they didn’t even want to let me try to do it themselves, and I didn’t want to upset them by arguing that I could do it myself. So I just let them do it.
It makes me feel like I’ve failed at another physical goal I have set myself, I feel like I’ve failed at something that’s so simple that I should be able to do myself. I just wanted to try, to have it done my way, and I didn’t get that. I’m trying not to feel to guilty about that honestly, but it can be very hard. To be honest with you, I rarely get the chance to have things done the way that I want to. But that’s just what happens when you need a lot of help from others, you rarely if at all get any control over it.
It sounds ungrateful, I know. But just imagine if you had no say in all the little things around you. If you couldn’t decide exactly how your coffee was made, because when someone does a lot for you, you can’t ask them to remake coffee that is just wrong. That’s to ungrateful.
It’s not being able to do the little things that really get to me. And that’s why I’m trying not to overthink the floor, remind myself it’s done now, and in the grand scheme of things it doesn’t really matter now.
I’m glad I have the help I have, I just want the space and time and access, to do things by myself sometimes.
The last post I wrote here was on my difficulties writing, and now that I’ve opened my laptop, I feel like in a way I could write more. That got me wondering if my biggest issues is opening my laptop? Like a more techy version of struggling to pick up your pen, I suppose. Once it’s in your hand, the hardest part is over.
So maybe once I open my laptop, or perhaps more specifically the file I’m working on, the hardest part is over. Who knows?
All this said, as I sit here writing this, despite my increased motivation to do so, I can feel the fatigue setting in my body. Despite only having been awake a couple of hours, I know that I could really do with a nap. But i don’t want to put that need to nap on the person I live with. We’re watching something together, and I don’t want to destry, I mean I don’t want my fatigue to destroy what we are doing. I know they will be okay with me sleeping, but it being something that feels so out of my control, doesn’t mean I don’t feel guilty. If I’m completely honest it makes me feel more guilty.
It’s an odd feeling, being both motivated to write, and fatigued at the same time. My brain feels wired, with words and ideas. It feels like breathing to get them out, to see them on a screen, to get some sort of release. Like I don’t even have to try to get it done. But my body feels tired, like I can’t keep up with the words I want to write. Like my body didn’t sleep last night, even though ny brain did,
This isn;t how I always experience fatigue, just how I’m experiencing it right now. The physical slowness, tiredness, is always there. However the mental tiredness comes and goes with the fatigue. Sometimes my brain feels just as tired as my body, and that is actually easier to deal with. At least everything I am feeling then is on the same page, right now it all feels to different to suceed at at.
I have so many ideas that I want to get out, but right now it feels harder to get the words out over the tiredness.
I just need a nap, sorry.
My Inaccessible Life 