When you’re acutely aware of how little you can control in life, the things you know you should be able to control, hit different.
Tag: Cerebral Palsy
Sleeping in my chair.
This is where I’m spending my night tonight. It’s not good for me but it’s worth being able to spend time with my siblings. But that’s the way it has to be sometimes, when you live in an inaccessible world. You have to be the one to sacrifice to spend time with the people you care about.
My chair cut out randomly today.
So this wasn’t the post I was planning to scare today. I’m still of two minds as to whether it’s time to start writing on this blog again yet. Does anyone else get the feeling after you loose someone that’s it to soon to start getting on with life? But at the same time it’ll always be to soon and you’ll have to start getting on with things anyway?
Today my chair cut out on the ramp outside my flat. It has temporarily been fixed and I am waiting on the engineer to get it fixed properly, so don’t worry I am no longer stuck on the ramp. And thankfully I had people that were able to help me with this situation.
But it kind of ruined my plans for the day. Which was only going to get my flu vaccine, so it’s not the end of the world, but still. It’s really frustrating when something to do with my disability ruins my plans for the day. It reminds me that I’m not really in control of my life, my condition is, or the technology I use is, I suppose.
This is the reality of a life spent relying on technology. Some of us have no choice in our reliance, but that doesn’t stop the technology being fallible. Something can always brake, something can always go wrong. And it stops my life in its tracks when that happens.
When it happened in all honesty I just didn’t know what to do, because it had never happened before. One advantage of this, other than at least for today not having to get jabbed in the arm, is I now know what to do if this happens again, though obviously I hope it doesn’t. And it happening today it’s not the end of the world.
My chairs being fixed now as I finish this post. But here’s an important reminder if you or someone you know is reliant on technology to live there day to day life. Technology will have faults. It will most likely stop a person being able to do what they want to with there day from time to time. It’s not their fault and they feel bad enough about it, so don’t make them feel worse about it.
Nobody puts baby in the corner.
But sometimes it’s best to put me in the corner.
And that’s just the reality of living in a society where 99% of the homes are inaccessible to you. But you still have family, you still have people you wanna spend time with especially unimportant dates, like today was for me. So you allow yourself to be put into the corner to be out of everyone else’s way.
To be fair to them, it was the best place to put me to give me the best view of the room. But it did feel very very much like I’d be in the way if I was anywhere anywhere else. So is it really a choice then, if I feel like like I have no other options?
At least I got to be involved. At least I can get in the house at all. At least I was some consideration when they were looking for a home. Even though I do have to go up and down a very dodgy and frankly scary ramp to get in and out. At least I have some access which is better than none.
I worry that I’m never going to feel as if I belong anywhere. Even in my own home but especially in society as a whole. And being in someone else’s house is just a reminder of that.
I know it’s wrong for me to make their home all about me. But I also feel like I have to think about about me because someone has to think about me and the rest of society has failed to do that. But can I judge the people I care about about, the individuals themselves for the home they choose, when the majority of homes are inaccessible to me to begin with.
The answer is it would not be fair to. And yet I wish I could, I wish it would be fair of me to blame someone sometimes for how inaccessible the world is to me. Not just be mad at the somehow non-existent yet also everywhere “society” that is to blame. People caused the ableism I am forced to live with, and yet in most situations I can not be mad at people for it. I know why but at the same times, it makes absolutely no sense.
But at least I can get in the home of the people who I care about. Despite my the fears and difficulties and only being able to get in one room. At least I was a thought, right? And something is better than nothing.

Sometimes disabled people need to travel together.
But unfortunately, public transport is rarely built for us to do this. And neither our taxis, in reality.
The truth is society doesn’t really seem to want disabled people to travel anywhere, never mind together. but sometimes we’ve got to do what we’ve go to do just like everybody else sometimes travelling with the disabled people.
It’s funny, in that way that’s not funny, that I’m here justifying travelling as a necessity, because doing any thing for fun is just unthinkable as a disabled person.
But public transport really needs to be accommodating of more than one visibly disabled person at a time. Can you image if it only accommodated one (visibly) non-disabled person at a time? Society would all be mad and be saying it’s a waste of money, but when it’s disabled people it’s justifiable.
To make matters worse society often pushes disabled people together, especially when we’re young, they believe we should all be friends. And maybe that’s because they don’t want us to be friend with non-disabled people, but they don’t want to feel guilty for us having no friends.
I don’t know if this is true, but it is something I’ve always believed. I’ve definitely had non-disabled people introduce me to disabled people with the assumption that we’re going to be friends just because we’re both disabled.
And then they create a society that’s not designed to have us in it together. Which honestly makes no sense.
An accessible one.
What does your ideal home look like?
Honestly, this is this is the reality of being disabled for a lot of people. Most of us want what non-disabled people have and take for granted. A home that I can live in which is completely accessible to me.
An open-planned home, with flexible furniture. And all the accessibility equipment I need through out.
Can I live alone?
Honesty I don’t know. And that might be a question I have to answer sooner rather than later, given the current situation I find myself in.
There’s lots of factors to be considered here, but with this post I will be focusing on whether I could do so emotionally rather than practically.
I don’t know if I’m more worried to try just because it’s scary to do new things or because I’m scared I won’t be able to do it.
It’s hard sometimes being so physical disabled, being so reliant on others, and being so acutely aware of just how reliant you are. I think the push to possibly living on my own is a reminder of this. And the fact that it’s not exactly on my terms makes it all that little bit more emotionally challenging.
Trying to be helpful.
So today, I pushed myself to do a lot, I went out of my way to be there for different people in my family. And as my wife always runs on the schedule of my carers, I had to fit doing what I could into them.
Honestly, that’s one thing. I don’t think people consider about getting carers, is how regimented your life has to become as a result. You have to do things at the same time every day regardless of what is thrown at you during that day that might change that. On this day, it was simply taking something that had been forgotten by one person to another, but I had to fit that into everything else I had to do and fit that into my care as well.
I like to do as much as I can for other people, it’s probably some internalised ableist part of me that wants to feel useful because I need so much help off others. As there isn’t much I can do for others, I want to be sure that what I do I do properly.
As I have to get public transport everywhere this can be quite difficult to do when it involves going to different places as it did today. But I do the best I can, and just hope I’m useful.
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.
One day when I am left home alone, I won’t drop anything, I hope.
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.
My Inaccessible Life 