I think the most unique thing about humans is the way we experience emotions.
The fact that different things make us all angry, sad, scared, loved. While you may understand someone’s emotions it can be difficult to understand what triggers them, and impossible to understand how they feel them. And I honestly find that extremely fascinating.
I firmly believe that nobody’s experience is exactly the same where emotions are concerned. But if you can try to understand someone’s emotions in a situation you may be able to understand more about them and who they are as a person.
I feel like emotions, the emotions of others, are a big part of how I understand the world around me. I think this comes down to my disability, and the fact that I cannot understand the world completely physically. No matter how I hard I try, physically there will always be things that I miss due to my disability. But emotionally I am able to have a more complete understanding of the world around me. Man made ablesim doesn’t exist in the emotional world.
But just because I understand the world around me better through emotions, doesn’t mean that my emotions are easier to deal with.
At the minute I am dealing with anxiety over doing something that I know is important but scares me because it involves a phone call. I hate phone calls. No matter how important I know they aren’t I don’t want to make them. Annoyingly sometimes I get the confidence to make the necessary phone calls, but of course this never lines up to when I’m actually able to do that. And when I am able to do it, my anxiety acts up again.
What I can be sure of is my emotions don’t like me. But maybe that’s part of what makes me a unique person.
It may surprise you to learn, or it may not depending on your life experiences, that hospitals can be very inaccessible places to be.
I am fortunate enough to not have to spend too much time in hospitals, but I do have one fairly regular appointment. Today I’m at that appointment, though at a different hospital. And I have to be honest, that the same appointment being at a different hospital has really thrown me.
It feels as if the routine of my regular appointment has been disturbed. The people assisting me, don’t know me, and to be honest with you it makes the experience more difficult.
I’m not talking about the medical side of it all. I’m talking about the other bits required because of my disability. The parts of my life that follow me around and always seem to get in the way.
The biggest part is hoisting. Something staff generally don’t seem to be used to. My regular hospital got used to it because of me.
Getting me on the bed is such an experience, that it is almost worse than the procedure sometimes. These are complete strangers I’m trusting to take me out of my chair, in an unfamiliar environment, and I have no choice in it.
I should be used to the fear, and the anxiety. Getting out of my chair. The uncomfortable nature of it all. But I’m not sure I ever will be.
Being disabled isn’t accommodated well in hospitals. They expect you to be ill, but not to have ongoing problems they can’t solve. Disability seems a step to far for them.
All of this and its not even the procedure itself I’m worried about. In fact that’s probably the easiest part.
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 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.,
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.
If you pay that much attention to this blog and what I write, you may notice that occasionally backdate posts. Who says I don’t get to play a little bit with time.
I had to do it with it my last post, because I’ve just slept almost 12 hours, apart from being awake briefly when my carers came. This occasionally happens to me, and is more likely to happen when I haven’t been sleeping properly. It’s like my body needs to shut down physically for a while.
This time I was woken up by a not nice dream that I’m trying not to remember.
Occasionally I wake up well rested from these crashes. This is not one of those times. I feel a lot less fatigued but I still feel tired, like I could still do with a nap. But I always feel that way.
This time I’ve also woken up cold and uncomfortable. But there isn’t a lot I’m able to do about it. I kind of wish I was still asleep.
It’s a lie that you ever get used to the pain. I think sometimes you just forget it’s there. But sometimes it feels different, as I write this my arms are aching. And while it doesn’t hurt more, different pain throws you more than the pain that happens all the time.
But the electric blanket is helping. And I’ll be getting up in about half an hour, and getting on with my day. I hope you’re able to get on with yours and that you have a good one.
What are your favorite physical activities or exercises?
I love a good nap, and to be honest I think most people feel the same.
The perk of having a physical disability is that you don’t put the same pressure of physicality on yourself that able bodied people do.
Often I see people push themselves into over exertion, doing something to keep themselves fit, because they think they need to.
I’m not talking about being healthy or doing what you love. Both of these things good things to do and can both involve physical activities. But it’s important to remember that these things mean different things to different people. That physical activity looks different for everyone.
Picking up a cup to drink a coffee it’s still physical act, and yes I’m saying that as a reminder to myself to drink the coffee next to me now. But don’t let anyone make you feel bad if this is all physical activity you can manage or even that you want to do.
As a full-time wheelchair user, I’ve become what I call very wheelchair shaped. by this, I mean that unsurprisingly, my most comfortable position is in my wheelchair as this is the position I spent most of my time in. Over 10 years ago, I decided to stop doing physio which likely increased the speed at which I have become wheelchair shaped. But honestly given how much time I would spend in a wheelchair, normally I think this was an inevitability. I think physio would have only put off this happening by maybe a few years if that. And the physio that I had to do would have been aggressive and would’ve had to be consistent to be effective. For those have never done physio it is incredibly painful and honestly simply not something I wanted to waste my time doing. This is informed consent for you. The right to do things that may seem backwards so long as you understand the consequences. And I do and I have. Honestly, I’m happy with the decision I made.
All this to say it’s not a very good idea to sleep in my chair, but I usually have a comfortable night when I do it. so that’s the least I’m good thing I slept well.
But the question is why did I do it?
I try not to sleep in my chair, because I know that, ultimately it’s not good for me to do physically very often. But last night it was something that I had to do. This is because my sister was out at a concert and I can’t deal with the dogs and the carers alone.
My sister was however meant to put me in my chair when she got home. But I told her that she didn’t need to, because I was very dirty due to having warn the same pad for 24 hours.
However in reality the reason I told her that I would sleep in my chair was because she looked annoyed at the idea of having to put me in bed. She didn’t say she wouldn’t do it, and honestly I don’t think she would ever do that because she knows I need the help.
But you know when you just get that vibe off people that they don’t want to do something? It’s really annoying when that something is something you rely on them to do. So I thought it was best to avoid her having to do anything last night, I didn’t even eat.
I have now been sorted out and changed and am back in my chair. But I guess this one is just a reminder that sometimes the people you care for suffer to make things easier for the person caring for them.
This may be something to keep in mind when you’re struggling as a carer. Remember that you had some level of choice in being a carer, the person you’re caring for had no choice in being disabled. And sometimes they feel bad about needing help so try to what they can to help make things easier.
I have one question, would you sit in your own bodily fluids in order to make things easier for someone else?
Forgive me if part of this doesn’t make any sense I wrote the post the day and planned to post is. As always let me know if there’s any mistakes that mean the post doesn’t make sense.
This was the post I planned to write today, but as it is supposed to do, I suppose today’s daily prompt had me writing about screen time before I started this post. But never mind that let’s get into this one.
If it wasn’t obvious by my opening. Paragraph I am actually avoiding writing about this, due to it, still being emotionally raw and complex for me to deal with. However, I think this is something that I don’t write about now I have the time and space to do so. I probably won’t end up writing about it. And this is something that I think it is important to share and needs to be spoken about, or in my case written about more. All this to say just bear with me on this one.
As I write this, I’m sat alone with my babies because my sister is at a concert. Yesterday I was at the concert well at this concert, I posted the TikTok below.
Video Description: The video shows the view from a balcony at the back of a concert. The text “ Quick question, how would you feel if this was your seat when you arrived 3+ hours to a venue and were literally the first people here?”
This video is shows where I had to sit for the concert I was at yesterday. Despite arriving to it several hours early and before any other noticeable members of the crowd arrived.
I believed for this concert that I would be able to be near the front, as I am able to be in very similar venues. However, this clearly wasn’t the case and to be completely honest I was very upset about this.
It is often the case in venues that I have to go out the back door, accessibility reasons, but I honestly believe this is just because they don’t want to be sued. I really don’t want to be at the back of venue for a concert. This generally makes me very upset and reminds me that I’m disabled. It’s one of the few things that I really hate as a disabled. I would much rather be in the crowd, even if that meant I couldn’t see. I just want to be part of it. But apparently that’s too much to ask in most venues.
I think it should be the disabled person’s choice as to whether they go in a segregated area if there is one available at the venue. I do not think they should be forced to do this. Don’t get me wrong, I understand why this segregated area exists for some people as they probably feel more comfortable than they would if they were in the main crowd. my problem isn’t with its existence, but with its enforcement.
I love music. I love live music. I love concerts. I hate being segregated.
The segregated platform seems to be something that non-disabled people think disabled people need, and I very much doubt they have asked disabled people this. They certainly didn’t ask me.
It is segregation, not necessary treatment, to force people to go into a different area just because of who they are. If I phrase accessibility platforms like this, it doesn’t sound very fair does it? How would you like it if you thought you were going to have a good view and then had to go out the back, simply because of who you are, at every concert.
As I’ve said, I really don’t believe this is for my own safety, I believe it’s to stop venues getting sued by disabled people, and perhaps non-disabled people where they somehow to be injured by the disabled person.
I believe there should be some sort of waiver that the disabled person is able to sign to say they want to go in the general area, and then they should be allowed to go in the general area like everybody else. Perhaps an additional clause in the terms and condition of general sale tickets to prevent suing a venue if a person becomes injured while in a crowd should be added to the general sale tickets. In my opinion, something needs to be done so I and others that want to experience the way they want to.
Making me go out the back leaves me emotionally conflicted throughout the concert and honestly taints, the memories I have of it. That said I am not about to let this stop me going to concerts, I just wish my experience was different. To be honest honest, I just wish I wasn’t disabled when I’m at some concerts. Which when you, think about it is really sad
I apologise if this post isn’t clear or well thought out as I said, I’m still very emotionally triggered by this.
Disclaimer this post was written using voice to text. Please alert me of any mistakes that make the content unclear and I will fix them as soon as possible.
My Inaccessible Life 