Life is weird at the minute, in many ways it’s very good, in others it’s so hard. I’ve been living independently for the last month, and that has been an experience.
I have learnt that I can do a lot more physically than I thought I was capable of, to not only look after myself but also my babies. I have learnt that I can live a life I’m comfortable with, at least to a point, and I think sometimes that s all you can ask for.
I have learnt that you can make the best out of difficult situations, while respecting the fact they’re difficult.
I have learnt that sometimes you’ve got to just try.
If you could permanently ban a word from general usage, which one would it be? Why?
It’s often a word that is used in place of acceptance, as if it means the same thing when in reality I would argue that it means the opposite.
To tolerate something or someone is to put up with their existence, this comes with a general idea that you do not like or support their existence, but you’ll just deal with it because you have to.
To accept something or someone is to understand and support its right to exist. You want that person in the world.
See how the words are different, very different I believe. They definitely shouldn’t be used to interchangeably.
At least that’s what I said even though it wasn’t really what I wanted. What I actually wanted wasn’t even food, but a lot of the time I don’t feel like the things I want are important enough for me to ask for. \
What I really wanted was for my little girls polar bear teddy to be moved so that it sits over her urn correctly. I don’t think really that’s too much for me to ask for, but I know that the person helping me will think that it is. So I felt I had to make up something more acceptable that I needed there help with, like the fact I wanted some chocolate.
That is one thing I’ve learnt after having a lifetime of help from others, people will judge you for the things you need help with. They might still do the things you ask them to do but they will be very strange about it, and if you ask for to many things that fall into the category, they will simply choose not to help you anymore.
When you need a lot of help from others, you have to have your life run by them. It all ultimately comes down to what they will actually do for you, if they say no, then you are stuck.
I don’t think people really understand what that is like until it happens to them. It is really hard to grasp what it is really like to have everything in your life controlled, and as a result at least in some way judged by other people.
It’s difficult to believe I have a right to have a say in anything in my life, when I know anything ultimately comes down to others. That is why I struggle when people ask me what I want in any situations, because it just feels like that ultimately doesn’t matter.
Anyway, as for now I have the chocolate, so I’m going to eat some now at least.
Describe a man who has positively impacted your life.
Someone told me once, that I can answer the prompts anyway I want so I’m going to.
The first that comes to mind when answering this question is The Doctor from Doctor Who. Now I’m aware this isn’t technically a man or a human and even more technically is a TV character. But they were the first I thought of, and they have definitely had a positive impact on my life.
Doctor who was my first experience of something that acted as a level playing field for me. It didn’t matter I was disabled, all that mattered is I was a fan of Doctor Who. The lessons that the doctor taught really spoke to me, and I will forever be grateful for them.
Image Description: A picture of Peter Capaldi as the 12th Doctor on the right of the image with the start of the face of someone else below. There is a quote on the left of the image that reads:
I DO WHAT I DO BECAUSE IT’S RIGHT! BECAUSE IT’S DECENT. AND ABOVE ALL, IT’S KIND. IT’S JUST THAT. JUST KIND. IF I RUN AWAY TODAY, GOOD PEOPLE WILL DIE. IF I STAND AND FIGHT, SOME OF THEM MIGHT LIVE … MAYBE NOT MANY, MAYBE NOT FOR LONG. HEY, MAYBE THERE’S NO POINT IN ANY OF THIS AT ALL, BUT IT’S THE BEST I CAN DO, AND I WILL STAND HERE DOING IT UNTIL IT KILLS ME.
Even more so I will always be grateful for the friends that The Doctor gave me. This is the only Doctor I can honestly say I would trust with my life. And I honestly can’t wait for the special at Christmas.
I’m sorry for not writing more, I want to write more but I’m in one of those places where I want to write until I starting writing. But I’m trying.
Today I did a lot of little things, they were all new, and I’m quite proud of myself for doing them. But I don’t think most people would even call them skills, and that’s just sad to me.
I realised today that if something feels important to you, it is allowed to be important. It doesn’t matter if other people would find it important, you do and that’s all that matters. You should celebrate your wins no matter how others may view them, and that is what I did today.
I’m going to list the wins I made today:
I travelled to a place I’ve been to regularly but never on my own before, on my own
I figured out a change on the train, on my own.
I got on and off a train alone.
I ordered food from my phone and then picked up that food order.
I got a drink from a dispenser.
I got money out at the post office.
I returned a package.
These might seem unimportant but I honestly felt good that I managed to do all of this.
What personality trait in people raises a red flag with you?
Seems pretty obvious I know, but it’s hard to trust a liar.
It’s the little lies that really bug me, and I often can’t verify due to my disability. But it leaves you doubting people and not being able to verify anything.
Just tell people the truth, especially when they trust you, especially when they have no choice but to trust you.
I would love just to go to spa, to be somewhere warm with good food and lots of dogs. Somewhere I could be completely alone and independent, and at least right now, somewhere I wasn’t disabled.
This is what makes the question so hard for me to answer right now because not only is it reliant on lots of things being different than they currently are. It’s reliant on fundamentally not being me, at least right now.
This is how living with a disability works and disability pride works. it’s not linear. Pride is not linear.
Sometimes it’s really difficult to be happy with who I am and the life I have to lead. And that makes it very difficult to picture my ideal anything, when it all seems really far away from me.
I think my ideal week would just be me being happy, comfortable, not in pain and independent.
So as I try to get today’s post in before midnight, so that I don’t need to backdate it, I see that I would actually quite like to answer today’s writing prompt. However, I’ve already done this and for some reason you’re unable to answer a prompt once you have posted it on your blog. Now, that would make total sense if they didn’t reuse writing prompts. And I honestly can’t remember what I wrote for this original prompt and would really like to answer it again again. At the very least, I think I should be able to see what I previously wrote to answer the prompt so I would know what I said before. But as it sounds, So as it stands I’m just going to give answers prompt go again.
Quick reminder of a regular disclaimer on this blog. A lot of this post in particular is going to be written by voice to text, it’s not particularly accurate all the time and I don’t really have the energy to closer go over the post to ensure it makes perfect sense. So please do let me know if there are any mistakes you find the only if they affect what the text actually says. I don’t write my black post to be marked.
So the prompt I want to answer simply ask if you are holding a grudge what you were holding about? And that is a hard question to answer then I thought it would be when I just wanted to start this prompt.
I think I will always hold a grudge against WordPress for not letting me answer this prompt twice.
But in all serious, I think I will always hold a grudge against society before excluding me. It makes so much sense when you’re on the outside that no one should be on the outside because you know what it feels like like. It’s hard to listen to society explain away it’s okay that you’re left there. Sometimes I’m just really mad that they don’t rip it down and start all over so that everybody gets a fair shot. Other times I’m mad that I’m the one on the outside that other people get to live the life I will never lead. And not only am I supposed to be okay with that all of the time, if I’m not, it’s my fault for not being positive enough.
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.
While, I started this blog with the more specific topic of accessibility, it has become more about my life generally. I thought that I started it initially as a place to share inaccessibilities that I experience in my life, starting with this more specific topic, hoping it would keep me writing. I did this specifically as I have tried and failed at blogging for a continued period of time. But for some reason, this blog stuck, and it’s still going.
I think it leant itself towards my life experiences generally and some other bits of writing. And trying to post daily blog posts, though I have had to backdate a few became a clear motivator in keeping me writing. As well as giving me something in the day that felt like my own, and if I’m really honest with myself something that it didn’t feel like my disability prevented me from completing.
My blog has become my space to write about the things I feel in a more free way. And though I don’t feel completely free to share everything openly here, it is one of the places I feel most free on all of the internet.
And now because I haven’t slept, I’m going for a nap. Have a good Saturday.
My Inaccessible Life 