Yes, you’ve guessed it. I am home alone alone and have managed to drop something yet again.
It’s not that important and while the consequences are, I will be uncomfortable. I am still safe so that’s all that really matters. They will be back in a few hours anyway it’s nothing to really worry about. It’s more annoying than anything. I just wish I wasn’t so disabled sometimes.
It’s funny how quickly your feelings can change based on what happens around you. For me, my entire self-worth can be called into question because I drop something on the floor.
If it’s on the floor, it might as well be lost if I’ve lost it it’s probably on the floor. Is a variation of something I’ve said a lot. It just happens it, it is life. But when you can’t fix it yourself, it is frustrating.
This isn’t something I like to talk about, but I guess here is the place that I do that.
Brushing my teeth is always something I’ve struggled with, it’d physically difficult for me to do, but I realised recently that it’s more than that.
Partly to blame I think is the fact that regularly brushing my teeth wasn’t something instilled in me in my childhood. It now feels like something extra in my day to be done, rather than something to be done as part of my day.
But I think the biggest issue if I’m honest is the fact I need help with it. At the very least I need someone to get me the toothbrush, toothpaste and some water. Needing help is strange to me, it’s not as if it’s new, but certain things are difficult for me to ask for help with. Even though I know logically that it shouldn’t be, that I should be used to asking for things that I have to do it so much. But sometimes they just look tired or busy and I don’t want to ask, even though I know I can and I should.
If I could do it myself I think it would be easier to convince myself to do it. But I can’t at that makes it harder, in the physical and emotional sense.
I guess you can’t choose what’s emotionally difficult about life.
Due to a lot of the world around me being massively inaccessible, I almost always learn specific routes when I travel in well known areas. This is something now do without thinking because I’m so used to doing it, and I often don’t realise I’ve done it until I route I take has to change for some reason.
I only have to do a regular route a few times before I find ways that are comfortable to me. These are ways that are often so specific, they include travelling on a specific side of the road. I’ve even missed shops that are on the other side of the road to the route I’m taking, because I’m so focused on the way I have learnt to go.
When I have to change a route it can actually be quite scary and sometimes disorienting. One reason for this can be because I don’t know the condition of the pavements I will be on, or where drop curbs are. Sometimes I have to just change curbs that are new to me, because I can’t always tell how big a drop is going to be when I’m on the pavement. And as I can’t always see exactly where my wheels are, sometimes I hit pot holes, that I was unaware of previously.
To put it simply, I have to pay a lot more attention and take more risks when I travel on routes that are unfamiliar to me, so I obviously don’t like to do this.
Now I am able to manage better than some, when changing routes, despite my difficulties. For some being able to follow specific routes that they have learnt is more important than it is for me.
The point of this post is to hopefully remind anyone reading it that sometimes people have learnt routes for specific reasons, and they can’t just change them. Some obstructions like road works are unavoidable, what I mean by that is they require the say of the council not individuals to prevent. But individual pavement obstructions, such as where you park your car, is a different story.
It is worth remembering that people can’t just change routes. They can’t always just cross over to the other side of the road, to pass the obstruction you create.
So have a little consideration for where you park or leave things on the pavement. Just remember you may be blocking a path that is someone’s only way of travelling somewhere independently.
I am aware that this post may be considered slightly ironic given my current situation which makes travel difficult. But as I’ve had to explain this recently to others, after sharing pavement obstructions by hedges and vehicles, I thought it was worth also going over here as well.
I’m just tired of it, of all the little things I have to sort out for someone else to do just because I can’t do it myself. And for having to pay for those things to be done.
I just wish I didn’t need so much help, I wish I could do what I want to when I want to. I wish I could be in control of my own life. Sometimes it really gets to me.
So after being out all day yesterday, the person I live with seemed surprise that I told them I would be okay to handle what we’d being doing today on my own if they wanted to stay home and sleep.
To make it clear I won’t really be on my own for a lot of the day, but because they won’t be with me for all of it, for part of the day I would be on my own. Specifically while we get to the place where we’d be meeting family.
This is a well practiced route that I do almost every Monday, when we go for a family breakfast, so I’d be fine. In some ways it’s actually easier for me to be out of the house on my own than in the house on my own. My house is just that inaccessible in parts to me. But still they seemed surprised that I’d be okay to handle this on my own.
I think it’s easy to forget when you see how much help I need on a regular basis that I don’t need help for everything. That although some things are easier for me to get help with, it doesn’t mean I couldn’t manage them alone.
Interestingly as I write this I had to call for help, but remember what I said about my house not being that accessible to me? Blame the environment for that one.
Anyway, the way they said this was like they expected me not to go if they weren’t going, and honestly that annoyed me maybe more than it should. Like I said this is something we do every week, and a few times I’ve been too tired to go, but I’ve never expected them not to go because I wouldn’t be. It’s like they forget I am an adult that can do things without them. Maybe they do? Maybe everyone does? Maybe I do? I don’t know.
There’s something else I want to add about this weekly get-together. It started years ago, and initially, it wasn’t something I was invited to, which really upset me, and on some level, I think it still does. When I questioned why I wasn’t invited, I was told they just didn’t think I wanted to go. And I don’t know if they genuinely believe that, or if it’s just what they tell themselves to make themselves not feel guilty, or which answer to that is worse.
I personally think they decided that it would be too difficult for me to get there, and so decided just not to invite me. I never questioned it because for a while I didn’t actually know it was happening. But this wouldn’t be the first time my family have done something like that. Made the decision for me about going somewhere or doing something, and so never asked me about it. They once went to a theme park when they knew I wouldn’t be home.
This isn’t something I can bring up with them, as it will definitely start more drama than it is worth. I doubt they even remember what they did. But I do. I remember the exclusion, feeling like I was too much to be included even by my own family. That’s something that I still struggle with now. I often say I don’t want to do things, if I think having me involved will make things more difficult for others. It’s not only my family that have excluded me in this way throughout my life, but it definitely hurts worse when it comes from them.
But back to today, I will be going to the family breakfast, whether or not I have to get there or back to my dad’s on my own. It will be happening. I deserve to be involved in things, I deserve to be involved in this family. And this is how I want to be involved. Plus, I really like being able to have chips for breakfast.
Just remember that if you’re reading this, know that you deserve the same from your own family whether or not they make you feel that way. You deserve to be part of the gathering, part of the memory, part of it all. And if they exclude you, it is always a choice, there could’ve always been a way to include you. That is a decision they made, it is on them not you
I’m sitting here unable to sleep because I need help but I cannot get that help until the morning.
When a key part of your independence is needing help from others, you have to wait till they’re ready to help you, to be independent. So it can feel like you have zero independence at all.
Now I don’t have the emotional ability right now to argue how I’m still independent despite needing help and others are just a tool to get me what I need. I’m really struggling right now I feel so broken.
I tell myself I’m an independent person, but right now I’m not feeling that independent. I feel like a child who needs help with everything.
There was going to be more thought into this post when I started it. But I think the lack of sleep from an incontinence incident that I’m stuck waiting for help with is getting to me.
I don’t wish I could walk, it’s all the other things I can’t do because of my disability that get to me honestly. Like all the help I need. Like having to wait for others to help me. Not getting to do what I want when I want to do it.
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.
And I’m not sure that will ever stop surprising me.
Tonight I let the carers in myself, as I do periodically. These were carers that hadn’t been before when I had been in on my own. and so they were very surprised.
They kept saying that it was good for my independence. But I honestly don’t like them judging my independence, and praising me for what they think is a positive step.
To me a big part of my independence is relying on others, it is being able to ask for the help that I need when I need it. As this is something I have always struggled with.
It’s important to remember that independence is different to everyone, and that despite what the word may mean, it doesn’t just mean doing things on your own.
Additionally it’s not helpful to praise disabled people for doing things that non disabled people do all the time, like opening their front door independently. This is how inspiration porn starts.
It honestly gets old that people are so impressed with me living my life. I didn’t ask for their input and I really wish they wouldn’t give it me. You would think that carers in particular would know better.
Just keep your comments about people living their lives to yourself.
I just got back doing some adulting errands on my own. While out I asked for help from strangers and dealt with things not being as expected. I did this without a lot of anxiety; avoiding doing it for a long time or not getting something I wanted from the shop.
I know this might seem minor but the me from not that long ago would have really struggled with this today.
Remember to Be proud of yourself for doing the things that were once difficult, even if they felt easy to do at the time. Especially if they felt easy at the time. Younger you is smiling, you should to.
My Inaccessible Life 