Fatigue is a big problem for me at the minute. And I did the thing you shouldn’t do and googled, it’s going to get worse.
It’s really hard to get the motivation to do thins when I just think hey I’d rather be asleep than do that. And if I do massage to catch it where my brain is on board, it always seems like my body is on a different page.
There are many reasons why it can seem that is my body that makes the world inaccessible to me, and this is just one of them. I have to push myself against my own body.
I’ve tried to regulate my sleeping pattern and even if I can do so for a while, it never seems to stick. Something always happens, I sleep to much or not enough for one day and it completely throws me off.
I’m going to really struggle this week. I have a big day this week where I’ll be travelling all day, and I can already tell I’m going to be exhausted for it. Afterwards though it should help my brain and my body to reset.
So I guess this one’s just to say bare with those of us who seem like we never sleep or sleep to much. We’re trying. It annoys me to.
So money is tight but I have got in very good at making it work by now.
Many people would say that as I am on benefits this is how it should be. Benefits are supposed to buy you the essentials and not keep you comfortable. Those in charge of the benefits system will tell you that this is an intentional setup to motivate people to get into work. But this doesn’t consider people who can’t just go out and look for work to improve their situation.
To prove a point to those who could get a job to provide their income, those of us who can’t are made to suffer.
I would love to work. I have tried to get into work. But an ableist society, or my disabilty, depending on how I’m feeling about myself in the moment, have made this incredibly difficult if not impossible for me to do.
Society doesn’t want disabled people to be included. An how we are judged for being on benefits is a prime example of this. If we are able to brake free from the box that they want us in, to get a job and make money. Most of our benefits are taken from us at a rate that isn’t really proportionate to the cost of living in the world.
The UK does allow us to keep one benefits as disabled people, even if we find employment. But this doesn’t cover the deficit of disability, the disability tax, the reality of being disabled.
Though I started writing this post a few days ago, in relates to the topic I choose to write about when fulfilling yesterdays writing prompt. You can read that here.
It focuses on a specific area of the disability tax, food. Food often costs more money when you’re disabled because of the type of food that is accessible to a disabled.
Often ready-made food is needed over the cheaper ingredients that can be bought by some to make the meal for yourself. For me, this plays out in a reliance on microwave meals and takeaways.
Money is more of a balancing act when you’re disabled. You’re only allowed a small amount of it before you’ll be penalised for having it. Yet the things you need, the help you need; a cleaner, ready-made food, taxis, to name a few that apply to me, cost more money.
It doesn’t really make sense when you think about it that way. But I’m sure many people will tell you that things cost more when you have less money. But it definitely has a different impact, and sometimes a bigger impact when you’re disabled.
I hate that my independence isn’t always affordable.
A lot of people see things that make doing something easy as promoting laziness, but this just isn’t the case. I don’t believe that laziness exists and if you can do something in a way that is easier for you, you absolutely should. As someone who can’t cook, takeaways are how I cook. They’re both how I get to decide my own food, and contribute to the cooking in the house.
For me takeaways are an accessibility tool, though I love takeaways, even though I can’t always afford to have them. This can be seen as part of what is called as the disability tax, that is the extra money disabled people pay to have to live in such an inaccessible society.
For me it’s either takeaways, microwave meals or very basic oven meals. As I can not cook at all, and the person I live with has limited ability to do so. While society will tell you it’s easier and cheaper to home cook a meal, it’s not always easier (or possible) so the cheaper option isn’t always an option.
It’s also worth remembering the other areas of inaccessibility I face, such as my wheelchair or reliance on carers, that mean I don’t often go out to eat at restaurants. If I’m out I will eat, but I don’t think I’ve ever gone out to eat apart from with friends and family. So I’m answering this question from the perspective of takeaways rather than restaurants specifically, if that wasn’t obvious before.
My favourite takeaway has to be Mcdonalds I think. I like to keep it simple. But I also love a good subway. Something like Indian or Chinese is saved for special occasions like birthdays.
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.
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.
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.
There are things I’ve dealt with my entire life. The price of being disabled in an ableist world. The little things that are difficult about being me. I’m not used to them.
I’ve been told that I should be thankfully that I’ve never known different. As if that somehow means I don’t realise I’m disabled. As if never being able to look for the things that I want or look after myself. Should mean that I should never want to be able to do those things.
That’s not true.
There are days, or moments, where I would give anything not to be disabled. Where I just wish I could do the things I want to for myself. Where I could just find the things I’m looking for.
It never goes away, not completely. The desire to be free. I guess it’s human nature.
I don’t know that I’ll ever be used to being disabled. All I can tell you is right now that I’m not.
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.
Don’t worry, this someone is expected and they’re only stating the night. But I get a bit uneasy having strangers in the house, even when they’re expected.
I feel like they’re judging me. Testing me on how good I am at being disabled. That’s how I feel when I am out in public. But my home is supposed to be my safe space, it isn’t that when they’re strangers in it.
It’ll be okay, I know it’ll be okay but I don’t have to like it.
This is when I feel antisocial. It’s not that I don’t want to be around people it’s that I don’t want to be around people in my safe space. Logically, I know that it’s okay, that I feel this way, that it makes sense. But it might not make sense in the way that my behaviour plays out as a result.
I didn’t even leave my room when they came. I figured it was better that I stayed out of the way. And maybe deep down, that’s why I don’t like to be around people, because I just don’t want to be in there way.
Maybe this adds to me looking disabled. Disabled people don’t want to be around other people after all. It makes sense that I would fulfil another stereotype, whether I like it or not.
By the time this post is published they’ll have gone. They’ll go and things will go back to normal. And I can be as antisocial as I want in my own home.
I can go back to being as close to being alone as I can be, and try to convince myself I like it better that way. Maybe if I actually keep convincing myself that it will be true one day, and at least that part of my life won’t feel like such a contradiction.
My Inaccessible Life 