So obviously while someone was in the hospital I wasn’t focused on this blog. I basically came home and slept then went out very quickly again. So I’m going to do some backdated posts to get me back on track.
Family was in the hospital.
Tag: Wheelchair User
I haven’t worn shoes in 10 years, but that changes tomorrow.
Okay so there were a few times I’ve worn shoes over the last 10 years. But I did stop wearing shoes with any kind of regularity after an operation I had after high school, so that was 11 years ago. There was the odd occasion where I was made to wear shoes in order to appear “professional”.
But I haven’t willingly or consistently worn shoes, for longer than I’ve had Bella, who is 11 thus years. And that’s all about to change if these shoes are able to keep my feet on my footplates tomorrow.
My footplates were recently quite dramatically highered, becauae apparently they were in a very wrong position for me for a few years. However no one decided to tell me or my body that. To avoid going straight to straps I’m starting with just adding some grip in the form of shoes, or shoe like slippers, and seeing if that solves the problem.
Technically I’m starting with slippers because you’ve got to start somewhere, right? And they won’t change the position of my feet, this is particularly scary for me on my right foot an ankle which was wrongly placed in the cast after that surgery and so is now no longer straight.
This feels like a dramatic change to my life, and the way I relate to my disability. But hopefully it works and ends up being good. And at least I won’t go through shoes, or slippers, that quickly, as they won’t touch the floor.
Wish me luck.
Sometimes you’ve got to try different, right?
Check out my brief Tiktok about it here – if you like.
The Social Model of Disability.
Now I was using this as a point in a tiktok video. And though I decided not to use it I did share the video after.
It got me thinking about how much easier the world would be for me, for a lot of people, if they were just thought about when things were created. How much easier we could make the world now if we thought about people and what they need when things were upgraded.
People don’t want to do that though, and many have convinced themselves it’s impossible to even try. We still have a long way to go to have a truly accessible world, and that’s a little sad sometimes.
Doing what you can.
I think when you need a lot of help from those around you, being able to help them can be something even more important to you than most. I don’t really want to say it feels like like paying them back, because that suggests that you should have to pay those that helped you back for that help, and of course you shouldn’t. But if I’m honest with myself, it does feel like that.
So when I’m able to help someone, I push myself to do that more than I should, and perhaps more than most would. Sometimes doing this can be to my own detriment, as was the case yesterday.
We ended up having to get a taxi part of the journey home from the concert on Tuesday. While this was in part due to public transport ending before the concert had finished. It was over a distance that I would normally be able to travel in my chair. But because of things I had done earlier that day and having thought far enough into the future, I ended up with very little battery in my wheelchair and would not have been able to make the journey.
Earlier in the day I had ran errands for a family member whose car had broken and needed things picking up. This person is not able to travel without their car as they are unable to walk long distance.
It’s a learning experience when you’ve always been disabled watching those around you become disabled. Watching how they react to it all, how they adjust to their new normal. And sometimes unfortunately how they give themselves to grace they never gave you.
But not to dwell on that. Here was something I could do for someone who has done a lot of things for me regularly in my life. I just didn’t think through the consequences of helping them.
That is honestly a really frustrating part of being disabled, when others need your help, you still have to consider what you are able to do within the capabilities of your condition and situations. Sometimes this means you are not able to do everything you want to be able to do for them. It’s one thing to let yourself down, it feels so much harder to let other people down.
So I was going to do what I could despite what it cost me. And in all honesty I didn’t even realise until it was too late. But it’s not the end of the world, I got home okay and had a great night. And I managed to help someone, so that felt good too.
I just wish that wheelchairs could be charged using USB from a powerbank. That would honestly be the most helpful solution so my wheelchair is never able to limit my independence due to its charge Maybe one day it will be possible. 
Two wheelchair users, one bus.
It always surprises me, but it probably shouldn’t anymore, that public transport is generally only designed for one person in a wheelchair to use at a time. We don’t in fact all know each other and coordinate when we need to do things together, contrary to popular belief.
As I write this I’m on a bus on the way to pick up some medication for a family member, I like to be useful and it’s not often I can do that without actually being in the way, but today happens to be one of those days.
There was someone else that wanted to get on the bus in a wheelchair, but they couldn’t because I’m already on it. I feel bad as if somewhere it’s my fault, even though logically I know that it isn’t because I didn’t design the buses. But can you imagine if the roles were reversed?
If public transport was only designed to take one non- disabled person at a time? How annoyed would they be at having to wait for a bus with a space on all the time?
But it doesn’t matter that disabled people have to wait. It doesn’t matter that wheelchair users can never go out with other friends in wheelchairs when they need to use public transport. We almost always have to meet them at the place we’re going. We don’t get the full experince.
This is made even worse when you realise that society actually pushes disabled people together. They think it would be easier for us all to be friends at a young age, because no one who isn’t disabled should have to be friends with someone who is. But then don’t create a society where you’re actually able to do things as friends. It’s just weird to me.
Learning Routes.
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.
The heat is really messing with me.
So at the minute where I am it’s very hot. And the biggest pain killer I use is heat, specifically a heated blanket. But due to the heat I am unable to use it as I would, without sweating so much.
This means that I’m in more pain than I’m used to. And when you have chronic pain a change in your pain can be really difficult to deal with.
It’s really throwing me off honestly. On top of the not being able to sit in my wheelchair issue due to the cushion. I really feel like my condition is controlling me lately, rather than the other way around. It’s very frustrating.
Sometimes you have to compromise
It is the norm that many of the places in society are inaccessible to me, that is the result of systemic ableism. Both societies view of disability when they build buildings and business owners view when they find places for their businesses. It’s just life for me, and many others, unfortunately.
As I rule I try not to go to inaccessible businesses. This is both because of the obvious reality that the businesses simply aren’t accessible to me, but also because I do not want to fund businesses that are inaccessible. I firmly believe that those with inaccessible businesses make the decision to have an inaccessible business. Whether intentionally or unintentionally, sometimes they just haven’t thought. But I still hold them responsible for that, hence why I try not to fund them.
But sometimes needs must.
And while it annoys me, I’ve spent so long looking and trying different dog groomers, for some reason they never stick. I can say the same about cleaners, but that’s a different story. I got tired of paying the extra money for a groomer with a van to come to my home once, then to be let down when I need them to come again. I care to much about my babies to let them suffer because of my disability, and this groomer is a very good distance from my home.
So the fact I can’t actually get in, seems like a very small problem, given they were also willing to work with me. While the fact I have to compromise and be served from the street irritates me. Sometimes you just need to do what you need to do to get the service you need.
She does look lovely, and it’s Immy’s turn on Monday, and all being well I will stick with them. I can make it work, it just really annoys me that I have to be the one to make it work. It’s always me compromising.
To business owners out there who may stumble across my post, make the right choices and use accessible premises. It’s the right thing to do.
Lost and not found.
I know I’ve written about this one before but it’s really bugging me again. And in true deflecting me style it’s not even the biggest problem I have to deal with now but we’re going with it anyway.
I think I’ve lost a bottle of pee.
Now in my house that’s not as stranger sentence as it might seem. Given I use a catheter to empty my bladder into a plastic bottle. I have been known to loose said bottle of pee in different areas, both in and outside the house. Now this post is less about the hottie of pee and more about the fact that I’m unable to look for it myself.
Now because I can’t look for this myself I always feel like it hasn’t been looked for properly. Years of mistrust slowly creeping there. And there’s very little I’m able to do about the entire situation, that in itself is the most frustrating part. If I could look myself, I didn’t find it, I know I would’ve tried my hardest. I can’t know that for certain of other people.
Being disabled as essentially having trust people throughout your life, at least for me. You don’t get a choice about needing their help, and you need it whether you trust them or not.
I can’t really travel.
What are your future travel plans?
Yes for the reasons you’re thinking of, but also not really for those reasons.
Let’s just say that money can solve most problems and if you really don’t believe that then you’re not paying attention to how privileged financially you are. Money could definitely solve the problem with travel for me. While much of the world is inaccessible, many of those inaccessibilities can be overcome with money.
Money the world does not want me to have because it does not want me to make a living for myself and have to see people like me in the real world. Money the world does not want me to have because I would not confirm to the useless disabled person they believe I should be. Money they’re able to keep from me.
Society wants me to be poor, and so I cannot travel. It is that simple.
That said, I would love to go to Vegas.
I know I said I was going to write much and I think I’m still going to keep this short and sweet but this one was to good not to answer
My Inaccessible Life 