That’s sort of a lie. I was in it for maybe an hour? It just hurt to much.
There’s something not right with the cushion on the chair and it leaves the bar digging into my legs in a way that gives me pins and needles.
The immediate problem is fixable by getting out of my chair and moving the cushion forward. But there needs to be a bigger problem before I call and ask for help to fix the wider issue of the cushion moving. At least that’s what I tell myself, maybe I’m wrong and making myself suffer. I don’t know. Thanks anxiety. I just don’t feel like this is a big enlightened problem yet to get help with.
Today I just got out of my chair again, into my other chair, which to be honest has its own problems but at least doesn’t cause me as much pain.
I’m honestly tired of needing these mobility aids. Of the guilt I feel when they brake and needing help to fix them. But this is me for the rest of my life and I know that I have to accept that, it’s just hard.
I wish I didn’t need all this. I wish I could solve my own problems. To be honest I really wish I didn’t as much help as I do. Needing help consistently takes its toll. And I can’t just not have help for a while. I can’t have a brake from needling someone, from being disabled.
Honestly, I thought about writing this post for today, but I just never got around to it. So I’m admitting straight from the beginning that I’ve backdated this one a little. Sorry.
Honestly today was a great day in many ways and a difficult day in others. Emotions are funny like that.
I dyed my hair, and I really like it. It’s funny how something so simple (in theory) can make you feel so much more like yourself. I say in theory because it’s actually kind of complicated to do when you’re in a wheelchair. But it’s doable, and I love it. It’s well worth it.
But emotionally I struggled a lot today. Part of one of my chairs broke and I ended up texting my OT in the middle of the night about it. Honestly, it made me feel really guilty, as often happens when things break around me. Even if I’m not the one who’s broken them, I have a lot of guilt over the fact I can’t fix them.
I often spiral in the fact I feel like a brake or damage a lot of things. Which is tied to feelings I have of always being in the way, causing problems and making things worse. While logically I know that accidents happen, in practice they just make me feel guilty.
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.
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.
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 hoist broke today. A necessary piece of equipment I use to get from my bed to my chair. So I spent the day in bed.
There are different types of hoists which enable people that are unable to transfer themselves, to be lifted safely. My hoist is a ceiling hoist, meaning it runs on tracks attached to the ceiling. This is a lot more compact than a portable hoist, which is similar but on a frame with wheels which needs to be pushed around the space.
For those of you that don’t know I have included a picture of my hoist. The first picture shows how it was broken, the second picture shows my thankfully now fixed hoist.
Image Description: A picture of my hoist on the ceiling with the track visible. The top of the hoist shows exposed wires, and the cover is dangling above the part of the hoist a person is attached.
Image Description: A picture of the same hoist as in the first picture, above my head, with the cover now reattached.
My hoist was fixed very easily with the cover just being reattached by the engineer. It is something that a non-disabled person would likely have been able to do by themselves. However I often need help to do what others might view as a simple fix. And thought it best to get it fixed professionally to ensure it wasn’t accidentally broken more by someone else trying to fix it.
Now I could have gotten up after the hoist was fixed, but I honestly just didn’t see the point. This is why I like to get up and into my chair early every day, even if I go back to sleep because I find it difficult to find the motivation to get up later in the day. I’m very used to napping in my wheelchair or my other chair, which is also I we’ll chair I guess.
It’s important to remember that if a person hasn’t chosen to stay in bed, they’re not being lazy for staying in bed. The choice in there actions matters.
Another reason I make sure I get up and into my chair every morning is so that I don’t become unable to sit in my chair, and so that I am able to have as much freedom as possible to go out during the day.
When you rely on technology, on accessibility aids, to live your life, them braking is a loss of freedom. And as things almost always brake at some point, you just have to live your life with the potential loss of freedom. With the reality that the world could become inaccessible to you with no warning.
This can be one of the reasons someone may have to cancel plans with others with little or no warning. Just beware that when plans are cancelled at short notice, the person may not want to cancel on you. If it’s completely out of their control, don’t make them feel guilty for it, I promise you they feel guilty enough.
We can all feel like we have a lack of control in life, and there are many situations that we do actually not have control in life. However most people will have at least small elements of conrol, which room of the house they sit in for example. But when you’re disabled, it can feel like this applies to all situations, and sometimes it actually does.
A little compassion can go a long way, this applies to everyone, not just disabled people. I’m just thankful I can get on with the rest of my plans for the week.
So, as a wheelchair user, I only ever sit in my own wheelchair or on my bed. However, I was recently given another kind of chair for me to sit in, which sits me in a different position.
Prior to having this chair, if I wanted to get out of my wheelchair I would get in my bed and stay there. My bed was the only other place I was able to sit, and once I was in it, I struggled to see the point of going through all that effort of getting out again. I also didn’t want to put the pressure of transferring me, which can be a difficult task, needlessly on those around me.
This chair gives me somewhere else to sit, that’s easier to transfer to. I will hopefully give me a little bit more of my physical mobility back and be generally more comfortable, simply from spending more time sitting in a different position.
Using this chair is something that it will take time getting used to. I am also aware that there will likely be a point in the future where I have to make a conscious effort to sit in the chair, but I’ve done well so far. That said I will not be able to sit in it tomorrow, as I have places to go so I won’t have the time. I haven’t been told I need to sit in it any particularly length of time, so we’ll just have to see how it goes.
New equipment and / or mobility aids can take time to get used to, and they should be worth it, I hope. So please stick with the things you need to help you if they’re difficult in the beginning. Things should get easier, and I am hopeful that sitting in this chair will.
Below is a picture of me sat in this chair with my dogs on my knee, because of course they had to try the chair out with me as well.
Image Description: Myself sat in my new chair, with both my dogs, Immy and Bella sat on my knee.
My sister just drove my chair into my bed which then hit my wall because my bed is also on wheels. A wall that is very poorly painted as I live in a council house. A wall which is damaged again.
It keeps happening.
The price of living in a wheelchair in a flat not properly designed for someone in a wheelchair is constant damage of the building in various ways. I know this. I’ve been a wheelchair user my whole life. And yet it still frustrates me.
I will get over the damage I know I will, I always do. I know that it’s not really important. But right now I’m angry with myself for being disabled. All I can think is this damage wouldn’t be happening if I wasn’t disabled. The internalised ableism is winning.
But I know in reality that the problem is the inaccessibility of housing for people in wheelchairs like myself. That without a lot of money, housing will always be inaccessible to me and I will always end up damaging it in one way or another.
I just wish it didn’t upset me every time. When I know it’s an inevitability I can do nothing about.
I don’t honestly believe in the need to manage screen time in the way, I believe most people view it. I think screen time should be more about what you do with technology rather than how long you spend on it
Technology has acted as a window for me to accessibility in an inaccessible world. so to limit how much time I spend using it, honestly seems bizarre. To me, it seems like I would be limiting how much time I spent in the real world, which I am aware, is the complete opposite to how most people see the situation where screen time and the related technology is concerned.
Now, as I write this, it might be obvious that I am thinking of technology as a mobile phone or a computer. and therefore pre-labelling screen time as meaning time spent on such devices, using social media specifically. As social media has definitely been my biggest window to the world. I personally level criticisms at the way people use social media as opposed to the platforms themselves, but this is a point of written about previously and something to save for a further post.
I make this point, purely as I want to make it clear that I’m aware that screen time can refer to things other than social media and the use of mobile phones and computers. it can also refer to, and often does refer to watching TV or perhaps listening to music. Again, if this is something you enjoy, I don’t believe it is something you should limit yourself to a certain time period. Why should your joy be limited by other peoples perceptions of it?
No, I make such statements of somebody who is able to make my own decision in the world and free use of technology. As somebody who understands what others might say, I would ‘be giving’ up in order to spend my time using technology. In other words, I’m fully aware what I could be doing instead of spending my time looking at his screen, others may not be. By others, I mean young children, not simply somebody you disagree with, people can spend their time, however, like whether you like it or not. Children are however a different story.
It is my firm belief that children should be given access to as many different things as possible throughout their childhood. This includes social media and other sometimes tabooed websites, when children have been educated correctly on their use and safety, as well as other screen focused technology. I don’t agree with banning use of any type of technology with appropriate considerations. In fact in modern society, given how prevalent the use of technology, and the Internet is, I actually think doing this would be cruel.
I could write about this topic forever, but I should get back to the initial question asked.
I don’t actively manage my screen time, I don’t see any need to. I live my life as close to the way I want to, as I can, and don’t listen to arbitrary faults the people place within it.
And to anyone reading this, you think I should be limiting or at least monitoring and managing my screen time in someway, I say this. Make the world accessible first, and then we will talk.
This climate, this post was written using both a screen and voice to text. I apologies for any mistakes in it that may affect the clarity of this post, please do let me know if and we change any such mistakes.
My Inaccessible Life 