Sometimes I spend a lot of time thinking about what my life might be like if I wasn’t disabled. The life I may have been able to live if things were different, if the world that I live in, became accessible to me.
It’s nice sometimes to let my imagination wander, but I do wonder if I do it to much. I do wonder if I spend to much time thiking about what could be, and if it causes me more harm than good. No amount of time thinking about things maybe being different is actually going to make the world accessible to me. No amount of staring at a steps is going to turn them into ramps. This is paraphrasing of a quote by Ali Tanaka, if you want to look into it more. No amount of focusing on not being disabled, is going to make me not be disabled. But the world is hard, and sometimes you end up there.
I know that logically I need to focus on my reality, focus on today, on where I am now. To make the best of a bad situation, as it were. And some days I can do that no problem, some days I know my life relative speaking is pretty good. Other times I’m really struggling with the idea of existing for the rest of my life as me.
I’ve tried to do something with my life, to make the best of it. But there’s only so many times you can fight against the inacessability of the world around you, before you wonder why you even try. But I deal with things the best I can, as we all do.
The funny thing, that isn’t really funny, is how I get judged by people who don’t know me for how I deal with life. A post like this would be called to negative, even though ofren it’s more real than the positivity I feel forced to disaplay to the world. Honesty itsn’t something people tend to want out of you when your disabled.
When I started this post I knew where I was going with it, but the more I have written, the less I have been sure. Sorry, I’m trying.
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.
I want to be alone a lot of the time, at least I think I do. But my disability means that the times when I’m alone are often the most debilitating for me.
Take now for example, as I write this post I’m lay in bed, and I find that one of my chargers isn’t working. I have other wires but they are not where I can reach them myself. And while I could wake the person I live with, and they wouldn’t mind, this is not something I deem important enough to wake them after 12 o’clock at night for.
In the past when I have had a problem, but not a serious enough problem, I have created bigger problems that I deem worthy of asking for help for. For example dropping my bed control, without which I am unable to move in the night, which causes so much pain that I am unable to sleep. But that isn’t something I will be doing tonight.
No matter how much I find myself wanting it, being alone reminds me what I am unable to do on my own, it reminds me just how disabled I am. Being alone for any long period of time is always going to inaccessible to me. And sometimes, like right now, it is difficult for me to accept that reality.
I wonder if I do you want to be alone or if I just want to be able to do things for myself? Or if what I really want, is others not to have to do the things for me. While all those things sound the same, I don’t think they are. Wanting to be able to do things for yourself and not wanting other people to do them for you or different. One is about independence the other is about being a burden to those around you.
But when you can never be alone for any meaningful length of time. When you always need the help of others to do the simplest things. You are always going to be a burden, or at the very least feel like you are a burden, in some way or another.
Maybe the reason I want to be alone is because I don’t want to feel like a burden to anyone. And when I’m alone I can’t ask for help, so I can’t bother anyone, so for a little while I’m not a burden.
Not being disabled will always be inaccessible to me. And that means the life of those who aren’t disabled, the life of true freedom and independence, will always be as well.
So why call this post nighttime?
Well, if it wasn’t obvious that tends to be when I am alone, the most thanks to my messed up sleeping pattern. I’ve heard it said before that nighttime is the worst for your emotions, as this is when they are free to control you. And honestly right now I would have to agree.
Nighttime is when I am alone. Nighttime is when I realise being alone is inaccessible to me. Nighttime is when I cannot sleep.
So I’ve scheduled this post to be added to the blog at a time, I’m hopefully asleep. you’ll understand why if you read my previous post.
But as I write this post, I’m watching a tv show, due to the whole not sleeping thing. In fact that’s probably part of why I’m still awake, but that’s not something we’re going to touch right now.
As I watch this program, I’ve stopped, started, muted and googled things many times. And this is how I generally watch tv when alone. It’s obviously not appropriate to do this when watching tv with others. When I’m doing that I’m just usually on my phone.
I think it’s a control thing. I think it’s wanting to know the future but not experiencing the emotions that come with that. And I obviously have the most control over TV when I watch it alone.
It’s a silly thing to want control over. But when you feel as if you don’t have a lot of control in your life, you’ll take any control you can get, and that includes TV. Controlling the rest of the world, the rest of my life, feels inaccessible to me. Controlling watch I watch on TV and how exactly I watch it, is not.
Sometimes getting a little bit of control back can help. And I think as long as it doesn’t hurt anyone, including yourself controlling the little things can’t be bad.
But all of this really means that it’s just better that I watch TV alone. So I can do it at the speed that I want to do it.
Most of the time I keep the lights off in my house. If I don’t all I see is the damage I’ve done to the walls in my chair.
A combination of a house not built for a wheelchair user, and frankly shoddy council work. You can literally wipe the paint off, believe me I have. And because I can’t work a full time job, due to a combination of my disability and the ablesim and inaccessibility of society, I’m unable to do anything about it.
Maybe if I could work, if I could earn money. If I could have more than just enough to live on, things would be different.
But they’re not different.
So I skip the perfect homes, admire the damage and try to feel less alone.
I sometimes wish the things I couldn’t do didn’t bother me, and wonder if I would live a happier or a calmer life if that were true. But they do bother me. The walls in my own home can be difficult for me to look at. The homes that are more than just houses, make it harder. So I don’t look.
In my own house, the lights stay off as much as possible. And I cover what I can, though it’s not all I wish I could, of the walls. And I try to get on with my day and pretend it doesn’t bother me, and hope that one day that’s the truth. Or, you know, I become a millionaire.
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.
I begun writing this post with the knowledge that someone close to me will be going to the hospital soon, and while it is unlikely to be serious, I’m going to refrain from posting this until I know that to be sure. And yes I am doing this to save myself from more guilt than I already feel in this situation.
I am torn as I write this post, by that little voice in my head telling me not to make this about me. That I already make to many things in life about me. But I still have emotions that I want to express when it is safe to do so, and this is my blog, my safe space to do that. So despite the conflicting feelings about writing this post I am going to do my best to continue.
All that said know by the time this is posted, the situation they are facing will be clear. They will no longer be in hospital, and this is all I will be saying on their health as it is not my place to discuss someone else’s health.
What I really want to focus on is what it’s like as a disabled person to have someone you care about going into hospital.
In truth, this depends largely on why they are going into hospital and particularly how serious the problem is. I’m sure this is the case for everyone. But where I believe this whole situation is different for me as a disabled person, is asking the question, will I cause more problems being involved.
Sometimes largely due to the inaccessibility of the world around me, choosing to involved in a situation is something I must consider carefully. And his applies to hospital visits.
I could end up causing more of a problem than being helping by going to the hospital. I could end up taking the attention from them if they do not appear to be in need of help on face value. This is due to people assuming I am always the person in a situation that needs help. I can never be the person there to provide help.
If I have to go to an inaccessible or even just unfamiliar location like a different hospital. It can quickly feel like I become an obstacle to them receiving care, as my accessibility is something else that needs to be considered as well as providing the correct care.
If a problem occurs in the middle of the night, I cannot simply get up and go to the hospital. This is because I need carers to physically get me out of bed, and for public transport or accessible taxis to be available in order for me to get to the hospital. This means I am unable to be anyone’s emergency contact. While I know that this makes perfect sense because I am unable to be the help. I want to be in the situation. I’m unable to be there for the people I care about when they need me.
Sometimes it is better for the person I care about for me to simply stay away.
When my mum was in hospital the reason she died in hospital and not at home was so that I could be there. If she went home I couldn’t be due to the layout of her house. This is something I am as grateful as it’s possible to be in this situation for. As I got to be there for my mum. I got to do my best to care for her when she needed me. But it is probably always something I am going to have mixed feelings about. I will always wonder if she could have had a better death at home.
I do not want to be the centre of attention, I do not want to take any attention. But I feel lil my disability forces me to be in almost all situations. And I have to deal with the guilt that comes a long with this. Usually silently, so I don’t unnecessarily take more of the attention from the person who is unwell.
I just want to help. And hospital are usually situations where I am no help at all. So I just try my hardest to be there when asked and not to be in the way. To cause the lease problems and not drown in my helplessness caused by the lack of help I can provide.
The reality of being disabled all your life. My health having been the way it is for my whole life, the novelty has warm off with certain parts of my reality. This can leave me feel in like other people’s health problems are taken more seriously than mine. Other people get the novelty, that they deserve, but I don’t qualify any more.
Me being in hospital for certain issues in my life is just the norm now. I think there are some ways that this makes dealing with the problem for me easier. As I don’t have to worry about how everyone else is going to react. But I am also left with the emotional baggage of not having that support.
Tied to this is also the fact that my disability and health problems feel like such a big part of my identity, whether I want it to or not. This means that sometimes in the pat it has felt like people are stealing my identity by being ill. And yes I know how crazy and self dented that sounds.
While I don’t feel this as strongly any more, as I find my identity outside of my disability and the problems I cause. It sort of feels like the feelings are always going to be there.
Ultimately I know if I am not the one in hospital it is not about me. And my emotions should and will take be a second to whoever is in need in that moment. But being in the way, my helplessness in the situation, and feeling a loss of identity. Will likely always be something I find myself dealing with whenever someone I care about is ill.,
If you actually read my blog regularly, which I thank you very much for by the way. Then you’ll notice I try to post something daily, occasionally though I will admit that I have backdated a post or two. But you may also have noticed that some of posts have more substance than others.
This is because I have more motivation to write on some days than others. But I force myself to write something, anything, almost daily. And yes writing this post about writing posts is me trying to write something with zero motivation or idea what to write about.
I do this because despite how difficult I find it write some says writing is freedom to me. Writing sometimes feels like the only outlet I have in life, the only level playing field that I have.
I love to write. I feel sometimes that I need to write, and yet sometimes that I can’t write. So writing something daily, is better than writing nothing. There was a time when I wrote nothing, and it was a very emotionally dark time in my life. At least it’s putting words to paper, or screen to be more accurate.
From what I’ve read in the writers groups I’m in, I suppose you could say I have a major case of writers block. I want to write so badly, I have all the ideas. But I often lack the motivation to work on my ideas, or worse the physical and/or emotional energy.
When I do have the motivation but I lack the energy, I feel like my body has yet again betrayed me, in the only thing I feel I’m supposed to be good at.
I’m disabled after all.
But every word, every sentence, every post is me trying. Trying not to let the doubts or my body win. Trying to do something that I enjoy, even when I’m not enjoying it.
From experience a know that my disability means that my physical energy doesnt always match up with my motivation and mental energy to do something. I often find that when I have the motivation or the desire to do something, that my body seems to disagree with the fact that I want to do it, and I don’t have the energy to even try. There are many things that I want to do with my life that lay on the back burner because of this.
I just wish for once in my life that things would line up for me. That my body and my brain would agree on when I can do something, that way maybe I would be able to be a little bit more productive, and actually get the things done that I am try to do.
Maybe then achieving things will be something I feel like, I’ll be able to do.
My Inaccessible Life 