A bad experience at a concert can really through me, and that’s what happened last night.
If you want to know more specifics about the experience you can see the TikTok I made here. A poor inaccessible experience, and that’s putting it lightly, throws the entire image I have of myself as a disabled person into question.
It makes me wonder why I even try, if I’m just going to be treated like that. It makes me wonder why I even try. It makes me feel more disabled.
It shows me without a doubt that it’s society that makes me disabled, and that makes me sad. It makes me sad because I know there’s nothing I can really do about the way they want to treat me.
I just want to enjoy a concert. I don’t understand why that’s to much to ask.
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 😂😢
Image Description: picture of a clip from How I Met Your Mother on a phone, showing Lily and Marshall the captions read “there occurred a game-changing emergency.”
Make of this what you will. May or may not explain more later.
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.
So I’ve causing a bit of a problem or raising awareness depending on how you look at it, of the wheelchair accessible places on trains. Due to the wonder of the internet, what I have said got a little bit too popular, which means it hit the wrong audience in areas. But when it all got too much, I was easily able to just turn off the notifications for posts, and I’m here to say I love that.
Sometimes when people are being extremely ignorant, wilfully or otherwise. It can be hard not to continue to reply even when you know that you’re not getting through to them. Wilfully ignorant people have to want to learn something new in order for you to get anywhere with them. But this can be hard to remember in practice, especially when the truth is very often don’t want to hear anything other than their own experiences.
So you can end up going round and round in circles very easily. And it can be extremely helpful just to be able to turn the notifications off and have the circle be ended for you. But sometimes I wish possible to do in real life.
It can be hard to let things go even when you know that you definitely should. And I think it would just be nice if someone or something else could do that for you. Not necessarily permanently, but just so you could have a break.
In a world where we carry devices, we can be immediately contacted on with us all the time, I think that a leave me alone future for real life would be extremely helpful.
Maybe I’m the problem though. Maybe I just shouldn’t be drawn into such arguments so easily. But it’s one of the reasons I love social media, I get to argue my argue my points, state publicly whatever I believe is right, and my disability does not get away with me doing this.
Say what you want about social media, but it certainly has its advantages alongside its well known disadvantages. Perhaps so if you’re supposed to have a limited view of the world due to its accessibility.
I haven’t decided yet if I’m going to share more about the accessibility of trains, as has been my focus for the past few days. It’s not that I don’t believe in the importance of what I’m arguing for, I know that I’m right. But I just don’t have the energy to write about it. It really sucks when you never have the energy or motivation to do the things you enjoy, thanks fatigue.
Before I get all weird about this, I’m going to say it’s just eye drops, so it is really me being a little be extra about all of this. But this is my blog, so the only place as I get to do that.
All my life different medications have been pushed on to me. This is the standard treatment for your condition etc. So as soon as I was old enough, I decided that I would not take any medication or anything like that until I understood exactly why I needed to take it. This for me extends to creams, drops, painkillers, muscle relaxers, anything.
To be clear I’m not against medication, I will, and have taken antibiotics. I will finish the course. I will also take painkillers and muscle relaxers if I deem them necessary. But taking preventative things is not something I like to do.
Muscle relaxers for example, work best when taken regularly. But it was hard for me to take them regularly when there were days when I wasn’t in pain and it just seemed silly for me to take them. Specifically where muscle relaxers are concerned they would make me drowsy and as I already have fatigue, I have just never found the side effects worth it.
I have always been very aware of the likelihood of me needing to be on some sort of medication at some point in my life, so I didn’t want to start taking things earlier than necessary. Part of this is because I know that medication can stop working if you take it for long periods of time, so I have always wanted to be sure I definitely need to take something before I need to take it.
So the need for the eye drops have been explained to me, very well. And I will of course be using them, to protect my eye sight. But I kind of feel a little weird about it.
I feel like I have reached a milestone in my life, a weird milestone, but a milestone nonetheless. Given my disability getting this far in life without needing medication is something. I don’t want to say impressive because I know that taking medication is not a bad thing. But it’s starting now, for me, I guess.
It’ll be fine, I know. And I will get used to it, like everything else. But my first toe in the pond of regular medication, had to be something I needed help to do, didn’t it? I can’t do eye drops on myself. And that makes me just a little bit sad.
I just want to be able to do things for myself, but the list of things I can’t do for myself continues to grow. I know it’s not bad to need help, but it’s just hard.
As I said I know I’m overthinking this but I honestly can’t help it with this one.
Today was very busy with almost no energy. I slept 2 hours not consecutively, then had to get up and go out. I didn’t really stop until I got home about an hour before the carers. I then fell almost straight to sleep and woke up the next morning. Not including briefly being woken up for care which I honestly don’t remember.
I barely had the energy to function and do what needed to be done, let alone write, hence the backdated post.
I guess my need for sleep finally caught up with me. This happens occasionally. I just wish it actually made me feel like I’d slept.
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.
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.
First of all, I’m sorry about the title of these posts. I’ve been watching criminal minds and it’s making me feel… creative. Please don’t look too much into that.
Advance warning of things is very important for me as a disabled person. It’s the only way I can really exist in the world independently, or as independently as possible. When something is sudden, it can be accessible to me. Whereas with warning might have been able to do something about the inaccessible situation, and therefore make it accessible to myself.
That being said, I am aware that not every situation can come with an advance warning. And it is in these sudden situations that I find myself more likely to be at the mercy of my disability. In other words I am more likely to face inaccessibility in new situations. Which itself makes me more wary of them and explains why I prefer advanced warning of situations. But as I’ve said, I know this is not always possible, and I recently experienced a situation like this.
My area had a power cut recently, this left me with an unusable air mattress for a short period of time. But thankfully a small amount of increased pain and discomfort was my biggest problem during the short term without power. The most difficult part and the most inaccessible part of the evening happened before the power actually went out.
This night I was alone, just by chance, when there was a knock on the door that I was unable to answer. After learning about the power court, I now know that the knock was likely someone to warn me of this. But up the time I had no idea who was knocking on the door or why they were knocking, and this was very unsettling for me.
Note to self, I really need to replace my door camera.
But it wouldn’t have really helped in this situation, besides telling me who it was at the door. It would not have meant that I would be able to let them in or answer the door myself. And I know that I wouldn’t have felt comfortable to speak to them through the camera, even if it had this function.
There were two reasons I was unable to answer the door on this evening. The first, and the most important being that I wasn’t in a chair that I am able to move myself. This chair is what I refer to as my comfy chair, and is a wheelchair that is just that. The cushions are softer and it is able to sit me in different positions. But it needs pushing by another person, so I am unable to move it when I am in it.
The second wish I was able to answer the door is because of the babies. My lovely little fur babies, pictured below.
Image Description: This image shows my 3 pets lying on my bed, facing towards the camera. The first is my yellow Labrador Imogen, who is lay down. Next to her is my brown Cavalier, King Charles. Bella who is sat. Next to her is my grey cat Ellis who is lay down.
If I was aware that I was going to have to answer the door to somebody, I would ensured both that I was in my electric wheelchair so that I could answer the door. And that the animals were safely away, so they would not get out while I did answer the door. But if there is a sudden knock on the door, and the animals are not safely where they belong. I will likely not be able to answer the door.
Even if I were in my electric wheelchair which would enable me to try to put the animals somewhere safe, I generally don’t even try to door this when the dog goes. This is because I’ve had a lot of experience of the people at my leaving I am able to safely get to the door. So trying when I know I will fail, and they will leave, is simply wasted energy.
To anyone reading this, that may think that I shouldn’t have animals if they make me unable to answer the front door when someone knocks on it. Just know that I would rather have the animals, than answer the front door. Even without my fur babies, I don’t always get to the door on time, so while they make it more difficult, they are not the root of my difficulties answering the door.
When I order food, for example, I have to put the babies away before the food arrives and wait by the door. As if I try to get to the door after it goes, they will leave and the food will be left on the floor where I am unable to reach it. And yes, I learn this the hard way.
It may sometimes appear that someone chooses to make the world inaccessible to them, by a choice they have made, which seems to make the world more difficult for them. but it’s important to remember that everybody is entitled to live the life that they want to, to make the decisions that they want to make, so long as no one gets hurt. And that these decisions don’t need to be justified.
The world could be made more accessible for me as a disabled individual, and as someone who has fur babies.
Assuming that the person that knocked on the door was something to do with the power cut. I know that I am already listed on the vulnerable register for the people that provide my power. They could have a note section on this list which highlights those that need to be called as opposed to just have their doors knocked on in situations.
I just wish people thought about accessibility in emergency situations beyond having a list of those who need help. My name being on a list isn’t necessarily as much help as you might think it is.
It is also important to remember that the flexibility a person has in a situation isn’t always up to them. If they can’t be as flexible as you want them to be in the situation, don’t make them feel guilty for it. Especially if a little bit of common sense tells you that it isn’t their fault.
My Inaccessible Life 