Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
So I’m back dating some posts.
Life happens sometimes and there just isn’t time for you to do everything in the day that you want to. So I’m backdating some posts, writing this on Friday the 23rd August, that’s the beauty of the internet.
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.
Which animal would you compare yourself to and why?
As you may have notice with these writing prompts, I might not always answer them the way they’re intended to be answered. But maybe that’s the point of the prompts.
So in order to answer this question, how I want to, I have to answer it to different ways. Reflecting my life, I suppose. The way I would answer it on instinct. And the way, I answer it as a disabled person. This might seem odd given the type of question being asked, but I think it’s just hardwired into my understanding of the world. And given the fact I’m disabled I think that’s fair.
My instinct is to go with an elephant. They’re clever like to watch the world go by. They seem to revel in the joys of an easy life, and sometimes that’s all I want.
Taking my disability into consideration I think I would be a good dog. Dogs are calm and loyal and they understand the needs of the people around them, believe me a say this from experience of my own doggies. I think these are qualities that my disability has taught me.
I would like to be a dog most of all I think. The calm relaxed lifestyle, the love, to never get bored of your food. All of it just seems better than being a human.
Being disabled can be about giving up more than just the obvious freedoms of life. Sometimes you have to give up so those that care for you can have the freedom, they deserve as well.
Tonight and tomorrow night, the person that cares for me, has plans to go out. so they’re able to do what they want. I’ve had to cancel my cares calls for both of these nights. this means spending 24 hours without getting changed for two days in a row. I will be able to get changed in the morning however.
If I didn’t cancel these calls, then she wouldn’t be able to go out, it’s not fair on her if she never gets some fun.
To be fair, the reason that I’ve had to cancel, my call is more about my babies than me. I struggle to look after the dogs on my own for Carer visits. this is because they need to be shut away for the carers to do their job, and I can’t do this very easily on my own, particularly with my larger dog. I can have them away in advance of the call, but she wanted to go out early which would mean and them being shut away for hours, and then hours after the call until she arrived home again. This course isn’t fair. So I chose to cancel my call instead.
They’re worth it. I don’t regret giving up my call. But it does make me uncomfortable. I can see why some people would question why I would have dogs if they make things this complicated for me. But nights like this don’t happen often. And I would much rather have them than not. They’re my world.
Sometimes you have to give up things to be included when you disabled. And honestly, this happens more often than you might think. But sometimes like tonight, it’s worth it.
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.
List five things you do for fun.
I hope you’re able to write this list.
Remember it doesn’t matter what you for fun, just that you have something that you do for fun. Whatever that is, I’ve hope you managed to do that today.
That’s not strictly true, I have been sleeping, just not at what you might consider an appropriate time.
I’ve been sleeping a lot in the day and up most of the night. It’s what happens sometimes, my sleep pattern falls apart.
I find it really hard to leave the house, to get the desire to leave the house. I do go out to walk the dogs, it wouldn’t be fair to put this emotional state on my dogs, but that’s about it.
I come home from walking them, I watch TV and sleep a lot, on and off in the afternoon and evening. Then I’m up all night, sleep in the early morning. Till I get up to walk the dogs. And the pattern continues.
Part of me hopes this ends soon, that I can get back to normal. Part of me hopes I never will.
We’ll see what happens I guess.
So when the person I live with is out, I cancel my care call because the dogs are difficult for me to deal with on there own.
They were out tonight, so I got in bed a lot later than usual, and spent most of the night in my room with my fur babies.
Unfortunately, they knocked off the bed, which I use as a sort of table when I’m not in it, a lot of my things. And as I was home alone I was unable to pick them up, so they were stuck on the floor. This and a combination of me getting caught in some of my charger wires, meant that I was stuck in the same place in my room until they got home.
Now I can’t hold this against the person I live with, they obviously deserve a break. But it highlights to me just how much I need the person I live d with, and how inaccessibile living on my own would be.
Now the easiest answer if I wanted to live on my owm, would be to not live with dogs. But I would rather give up this small form of independence, for my doggies.
Some things are worth giving up independence for. They definitely are.
And it is best for me, and my babies, and also the person I live with funnily enough, that we live together.
Below I have included a picture of my girls that was taken tonight.
I’m lay in bed after attending another concert. One I’ve really been looking forward to, and I feel like being disabled ruined it. But logically I know that’s just my internalised ableism talking.
If you read my last post you’ll know that concerts are a complex task for me to begin with. And then to have that seemingly be all for nothing, is just hard.
I can’t say I regret going. But I can say the experience was ruined by supposedly necessary accommodations.
This was my view due to those accommodations.
Not for the first time, when attending a concert, did the accessibility here make me wish that I wasn’t disabled. It’s definitely another venue I will not be going to again
And well there is more I can say and more I should say on all of this. I honestly can’t think too much about this right now without getting upset. So I plan to return to this in the future, when I can emotionally process, just how this really felt.
But for now here’s a picture of my cat, who normally sleeps on my bed, but does not cuddle with me like this. All I can think is they must know I’m upset, we don’t deserve animals.
If you find yourself willing and able , could you check out this petition and sign if you agree.
Again, I’m happy to explain the whole situation, when I feel more emotionally stable and able to do so. I’m sorry for being so brief it’s just been a hard night.
Describe one habit that brings you joy.
But there always seems to be my dogs. Like they see who I really am, who I’m meant to be. We don’t deserve dogs.
So how exactly is this a habit?
Like any dog mummy, I talk to my girls. My baby bell. My ImJim. I love them so much. Sometimes it feels like they’re the only ones who listens to me.
My Inaccessible Life 