Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
I’m sat wrong in my chair today and I can’t fix it. There’s a bar under cushion which for some reason is digging into both my legs.
New pain is different. While this is pain and discomfort I’ve had before, it’s not what I’m used to every day, so it’s really throwing me.
I’m just going to have to deal with it today. I just hate it.
Fed up of business explaining away their choices for choosing an inaccessible venue. That’s a choice you’ve made. Own it. Own the fact you care more about your business than accessibility and stop hiding behind excuses.
I might say more on this later, I might not. I just don’t have the energy now. But you get my point. There’s no excuse for businesses having inaccessible venues and I will without exception be blaming the owner for this.
Sometimes if I’m lucky I’m able to get comfortable, for the record now is not one of those times. That said in the grand scheme of things I’ve been a lot worse.
But I know that at some point I’m going to have to change the position I’m in, and I can tell that’s going to hurt. I’m really not looking forward to doing it. So much so that I’m debating sleeping in the position I’m currently in, just to avoid moving.
Chronic pain sucks. The lack of control in my life sucks. But mostly right now my legs suck.
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.
Sometimes I think I’m so used to be tired that I don’t even notice that I’m tired anymore. I struggle to say I even have fatigue, it’s just me. Like the pain and discomfort, for me it’s my normal.
And then there are days like today where all I can feel is tired. Where the world feels a little bit slower and I’m fighting against the tiredness in me, as well as everything else.
Now I should say something clever or at least a little bit profound about living like this. But I honestly just don’t have the energy for that today.
I need to go back to sleep, but the joys of being me I don’t actually know if I’ll be able to sleep. I guess will have to wait and see.
You’re going on a cross-country trip. Airplane, train, bus, car, or bike?
The freedom people get when they are not disabled will probably never cease to amaze me. The freedom just to answer questions like this, to not be stopped by who they are when they try to do so.
Many of these modes of transport aren’t accessible to me, and those that require planning.
As a full time wheelchair user, an airplane is not accessible to me, it is simply too risky. If you don’t understand what I’m talking about, then you are lucky.
While a train is generally accessible to me, with assistance. There’s no guarantee that all the stations I may want to go to are accessible to me. In fact from experience, money aren’t, and this often determines exactly where I will travel.
While buses at least in my area are accessible to me, they are only accessible to me if there isn’t already someone in a wheelchair on the bus. One day, the people that designed for which transport might learn that multiple disabled people can and often do travel at the same time.
Certain cars are accessible to me, but not many. I cannot just get a lift off anyone. And while I can learn to drive a specifically adapted vehicle, to do get the vehicle would cost me money I don’t have. This is before I even know whether driving is something I would be physically capable of.
I’m going to just say that we bike is concerned, I cannot ride one and we’ll leave it at that.
You don’t travel to a place on a journey, you visit that place as well. Accessibility doesn’t stop in modes of transport.
The world isn’t generally accessible for people like me in various many ways. I don’t really get to explore questions like this, without an element of ignoring reality. There’s a word for this, which took me as surprising amount of time to remember at 3:30 am. Cognitive Dissonance.
I think somebody’s gonna read this and wonder why did I take it so seriously? It’s obviously one of those writing prompts like what would you do if you won the lottery? Reality isn’t really supposed to be considered in these situations.
But I’m not really good considering reality when someone asks me these questions. I’m not really good at the cognitive dissonance. I’m thinking about myself and situations I might be in. My disability is such an integral part of who I am and the experiences I have. That it’s hard to separate myself from it, even in the situations.
I suppose I don’t really know what it’s like to think as a non-disabled person. I don’t really understand what it means to have that freedom on any level, whether that be thought or reality, it doesn’t seem to matter.
Maybe if I had a bit more freedom, in reality, it might be something that would reach my imagination, a little bit easier. Then perhaps I could answer these questions as they were intended to be answered.
The only way I reach this level of freedom in thought, as I am sometimes able to reflect in my writing, is to completely distance myself from the thought. In reality, my freedom is always limited by the world around me and there is nothing I can do about it. As soon as I put myself in the situation, my reality hits again, and I am limited by it.
Please forgive the state of this post as my sleep deprived brain is unable to reread it and make sure it actually makes any sense at all.
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.
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.
I know that’s a weird statement, but bear with me a second. I’ve posted several times about the disconnected feel between my body and my mind, and that can make who I am feel inaccessible to me.
Like I’m never going to get to be the person I’m supposed to have been. Or myself if that’s any different. I’m that alone, doesn’t mean that my life is any less than anyone else’s as I make the best of it. It can put a lot of pressure on the life I lead now, make the decisions I make my life more important.
Failure hits harder when you have less chances to win.
My brain hasn’t got up with the idea that my body means there are less choices for me in society. And honestly, I’m not sure that it ever will. I think as a result who I am supposed to be is never going to feel reachable to me as a result. And who I’ve ended up being doesn’t feel like who I was supposed to be.
This is something that I think people understand a little more when there’s a visible change in someone’s circumstances. When the illness or disability is sudden and the effects noticeable. It’s seems like grief can be understood when change is involved. When it’s something you’ve had to deal with all your life, people seem to think you’ve already adjusted to it, so they’d be no grief involved.
But there is. And it’s valid.
Life involves a lot of grief that is hard for people that haven’t experienced it to understand. But that doesn’t make the feelings they feel less valid.
Someone made a comment on how benefits are spent, because they have a job and the person they were talking to does not. You know the classic, you dont work, I do, and thats what you’re spending my money on. I am one of the reasons this person isn’t working, so I feel guilty.
They then said they would like my life, to not have to work, and to sit doing nothing all day. I made the point that they would then have to take my disability from me. And I would rather have their job than my disability, so I could do what I want with my own house.
I’m sure you know by now you might have figured that this person is someone close to me, someone who should have known better. And yet they still think disabled people are playing the system.
I don’t know how many times I need to say it to have someone believe me. But I really want to work, and I don’t want to need to rely on benefits. To suggest otherwise is a harmful assumption, and is just unfair. To judge people on benefits for how they spend their money is cruel, to say the least.
If you want to have the benefits, and the perks, you also have to take the bad stuff, the reality.
You have to take the fact that you will never be able to help people as much as they help you. You will always need them more than they need you. Your control is conditional. Being viewed as an adult is conditional. You’re only a person when they want you to be.
Being disabled or being unable to work, is not a ride to an easy life. In fact the reality is the opposite. And I hope when you have to deal with this yourself, because disability is a when not an if, that no one makes you feel the way I was made to feel.
Please excuse this one, its a little more rant like than thought out. I don’t really have the energy for thought out today.
But I probably should be.
As I write this it is 5:30 am, and while I know I’m gonna regret saying this later, right now, I’m not tired. No doubt this is because I took a nap in the late afternoon yesterday.
One of the joys of having fatigue is you don’t choose when you get tired or how quickly you get tired. But I don’t always have fatigue I don’t think. Sometimes like right now, I have a lot of energy, so much so that I can’t sleep. Even though I know, I’m going to regret it later.
Is that part of fatigue? I don’t know.
One of the ways I have dealt with being disabled emotionally, is by understanding as much as I can about it as possible. But the research I have done, seems to draw a blanket fatigue. The exact symptoms could very easily fit into my cerebral palsy as well.
I suppose it doesn’t really matter, either way, I’m dealing with it, no matter what causes it right? But not knowing kind of bugs me. I do like to know these things.
My sleep pattern has always been messed up. I’ve always either slept not enough or far too long, and never seem to get it right. Either way, I am always tired. Right now I’m tired but that doesn’t mean I am able to sleep.
This is just another part of my body that doesn’t match up with my brain. And I should definitely be used to that by now. But I’m honestly not sure that you ever get used to being disabled.
My Inaccessible Life 