Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
Everyone.
This is not a debatable topic.
The right to exist isn’t something anyone needs to earn through anything. Especially work.
We have created a world which wrongly seems to only value those who can work, more specifically those who can give money to the economy. Forgetting the value of what it means to be a person, and that this value is something everyone has.
And I just think that’s very sad.
I don’t share posts here for debate. If you have an issue with anything shared in this post I don’t want to hear about it, it’s a you problem. Keep it to yourself.
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.
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.
It’s a common thing when you’re me. I don’t know what’s worse knowing the cause and not knowing there isn’t a fix or knowing the cause and knowing the fix but not being able to fix it.
It’s got to be knowing there is a way to fix it and not being able to do it yourself.
I’m waiting for the cushion to be fixed on my chair, it can take up to 6 months just for the appointment, who knows how long to actually fix it. So that’s (at least) 6 months of extra discomfort, often and eventual pain, with a solution I’m stuck waiting for.
Don’t get me wrong I know I’m luckier than some, to get this eventually and for free. But its still hard.
Discomfort can be more difficult than pain for me. The pain I am used to, it’s my normal. But the discomfort is new, and I don’t know how to deal with that. It’s going to be rough
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’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 yesterday (Today, because this will be a backdated post) I went out having been awake for more than 12 hours. By the time I was able to sleep, I had been awake for more than 24 hours.
This is partly my own fault as a stayed up all night, but I just couldn’t get to sleep. But I found managing to fall asleep, I woke up this morning having slept 12 hours.
Here it gets a bit timey whimey because I will be talking about the future in terms of when this is posted.
But I’m already tired, as I write this, even though I’ve slept 12 hours, and that’s just frustrating. I’m always tired. I usually more able to function if I have slept, but I’m still tired. And to be honest, it gets annoying.
I have chronic fatigue associated with my cerebral palsy, and it doesn’t seem to be something that is locked into our recognise as much. My tiredness is often blamed on my lack of sleep, and that Isn’t it helped by my poor sleeping pattern. They often think the fact I’m always tired is my own fault just because people don’t know better.
Anyway, I’m going go take a nap.
Image if your worked stopped paying you as soon as you earned what someone else decided was enough for you to live on.
You then had to live off your savings until someone else decided that you didn’t have enough money to live on so you should be paid again.
All the while you were still working.
This is the reality for many disabled people.
While if you’re lucky you’re on one of the few disability benefits that aren’t means tested, most are.
Benefits are the only source of income some disabled people have. Even if they are able to work, despite there conditions and the ableism they face in society. They still need the benefits to pay for the disability tax. The increased cost of living in society as a disabled person.
And yet if you what someone else seems is too much money, most if not all of your income is taken from you.
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 