Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
I started writing and fell asleep earlier today, later me is going to hate that when I can’t sleep. But the draft didn’t save so I’m not completely sure what I was writing about.
Fatigue sucks. It’s like my brain just stops being able to function and I wake up disorientated and unaware of when exactly I fell asleep. It’s not fun.
Hopefully I remember what I was writing about. If not I guess thet ones just lost to the world.
How do significant life events or the passage of time influence your perspective on life?
It’s hard to define what a significant event is, as they’re so subjective. That in itself could be something else I write about. But the passage of time seems something universal I can write about.
The passage of time influences my perspective on life because it changes what is and isn’t important to me.
Things that are important in the moment, don’t often seem as important when the time has passed.
Now I know there’s more I can say about this, and more that I relate to myself personally, but I’m honestly lacking the motivation to write.
Something on your “to-do list” that never gets done.
Sometimes I start writing and I run out of steam, ideas, energy or all of the above.
So I guess this blog getting done, gets done. But not in the way I plan.
Many of the other writing projects I have, don’t get finished. I have the ideas just not the energy. Maybe one day huh.
List five things you do for fun.
I hope you’re able to write this list.
Remember it doesn’t matter what you for fun, just that you have something that you do for fun. Whatever that is, I’ve hope you managed to do that today.
You get to build your perfect space for reading and writing. What’s it like?
But perhaps a dream that’s a lot simpler than you might realise.
I would love a space to write, and read, that was completely accessible. That had shelves which rise and fall, so I could reach them all. A table which does the same. And a good computer set up.
Easily controllable lights, that if I was feeling a little fancy would have different multi colours. But honestly that’s about it.
It is the simpler things, relatively speaking that would make me happy.
And to be blunt it’s the accessibility more than anything.
The frustrating thing about fatigue is the way it seems to hit me out of nowhere. Sure I was tired yesterday, but that’s not unusual because I’m always tired. I’ve said it before I’m pretty sure I was born tired.
But the fatigue is like my tiredness ratchets up by 10 extremely suddenly. Any plans I had to do anything go out of the window.
Hopefully I will get the post I wanted to do last night finished today, but as always I make no promises. And right now I’m going back to sleep.
What’s your favorite cartoon?
Actually doing what you want to is hard. Any person in the arts will tell you that.
As much as I have to write, as much as I love to express myself. a lot of the time what I want to say, never leaves my mind. The only person I can really be annoyed with about this is me.
As I write this, it is almost 5 am. And I’m actually using voice to text, it took me longer than it should’ve done not think of doing this, as cheating in someway.
Hello again, internalised ableism. I wish it was longer between our meetings.
There’s I really important post I want to share. But I’m annoyed with myself at not having the emotional energy to share it at 5am on a Saturday morning. How bad is that?
Does anyone remember watching cartoons on a Saturday morning? I think we need to bring that back.
Anyway, I can’t sleep because I fell asleep to early, so really, it’s my own fault. I knew it was a bad idea to go to sleep when I did, but sometimes fatigue just wins.
I had a world wind of a day yesterday, and I want to share some parts of it, well one particular part. But I can’t bring myself to write that post, for, well reasons. But obviously I can write because I’m writing this post, about wishing I could write that post.
Maybe it’s because the post I want to write feels so important, that I’m worried I’ll never be able to do myself justice with it. I just don’t know really.
But anyway, my favourite cartoon is Bob‘s Burgers. I wish I could explain why but I don’t really know. I love the way it’s written, the stories it tells, the inclusion, the escapism, the nonsense, all of it.
If you haven’t watched it, you definitely should. I know it’s shown randomly on some channels, but if you have Disney+, it’s mostly on there, apart from the season, which unfortunately I’m still still waiting to see.
I posted today in a fan group for the show, asking for similar shows to watch, as I’m almost always watching Bob burgers on repeat and I just wanted to see what else was out there. I got some lovely responses and some new shows to try. But if you have any recommendations, do let me know.
I should try to get some sleep, there is a possibility that I have a long day today, last-minute plans and all that. I don’t make them often as being disabled requires a lot of planning and last-minute plans are kind of the opposite of that. But I have options, so I’ll see how the day goes.
Either way, I have to be up in less than two hours.
As I guess is the same for most people, there is in fact many unwritten posts in my drafts that I really need to write.
If you write anything, I think the easiest thing to say about writing is it’s hard to actually write.
Sometimes I think maybe it’s because I put so much pressure on myself with writing. It feels like maybe writing is the only thing I’m any good at, and it’s not like I’m very good at it. But I really don’t want to loose the joy of writing again.
I don’t think this is something within my control and I am trying though. We’ll just have to see where it goes I guess.
This was the post I planned to write today, but as it is supposed to do, I suppose today’s daily prompt had me writing about screen time before I started this post. But never mind that let’s get into this one.
If it wasn’t obvious by my opening. Paragraph I am actually avoiding writing about this, due to it, still being emotionally raw and complex for me to deal with. However, I think this is something that I don’t write about now I have the time and space to do so. I probably won’t end up writing about it. And this is something that I think it is important to share and needs to be spoken about, or in my case written about more. All this to say just bear with me on this one.
As I write this, I’m sat alone with my babies because my sister is at a concert. Yesterday I was at the concert well at this concert, I posted the TikTok below.
This video is shows where I had to sit for the concert I was at yesterday. Despite arriving to it several hours early and before any other noticeable members of the crowd arrived.
I believed for this concert that I would be able to be near the front, as I am able to be in very similar venues. However, this clearly wasn’t the case and to be completely honest I was very upset about this.
It is often the case in venues that I have to go out the back door, accessibility reasons, but I honestly believe this is just because they don’t want to be sued. I really don’t want to be at the back of venue for a concert. This generally makes me very upset and reminds me that I’m disabled. It’s one of the few things that I really hate as a disabled. I would much rather be in the crowd, even if that meant I couldn’t see. I just want to be part of it. But apparently that’s too much to ask in most venues.
I think it should be the disabled person’s choice as to whether they go in a segregated area if there is one available at the venue. I do not think they should be forced to do this. Don’t get me wrong, I understand why this segregated area exists for some people as they probably feel more comfortable than they would if they were in the main crowd. my problem isn’t with its existence, but with its enforcement.
I love music. I love live music. I love concerts. I hate being segregated.
The segregated platform seems to be something that non-disabled people think disabled people need, and I very much doubt they have asked disabled people this. They certainly didn’t ask me.
It is segregation, not necessary treatment, to force people to go into a different area just because of who they are. If I phrase accessibility platforms like this, it doesn’t sound very fair does it? How would you like it if you thought you were going to have a good view and then had to go out the back, simply because of who you are, at every concert.
As I’ve said, I really don’t believe this is for my own safety, I believe it’s to stop venues getting sued by disabled people, and perhaps non-disabled people where they somehow to be injured by the disabled person.
I believe there should be some sort of waiver that the disabled person is able to sign to say they want to go in the general area, and then they should be allowed to go in the general area like everybody else. Perhaps an additional clause in the terms and condition of general sale tickets to prevent suing a venue if a person becomes injured while in a crowd should be added to the general sale tickets. In my opinion, something needs to be done so I and others that want to experience the way they want to.
Making me go out the back leaves me emotionally conflicted throughout the concert and honestly taints, the memories I have of it. That said I am not about to let this stop me going to concerts, I just wish my experience was different. To be honest honest, I just wish I wasn’t disabled when I’m at some concerts. Which when you, think about it is really sad
I apologise if this post isn’t clear or well thought out as I said, I’m still very emotionally triggered by this.
Disclaimer this post was written using voice to text. Please alert me of any mistakes that make the content unclear and I will fix them as soon as possible.
How do you manage screen time for yourself?
I don’t honestly believe in the need to manage screen time in the way, I believe most people view it. I think screen time should be more about what you do with technology rather than how long you spend on it
Technology has acted as a window for me to accessibility in an inaccessible world. so to limit how much time I spend using it, honestly seems bizarre. To me, it seems like I would be limiting how much time I spent in the real world, which I am aware, is the complete opposite to how most people see the situation where screen time and the related technology is concerned.
Now, as I write this, it might be obvious that I am thinking of technology as a mobile phone or a computer. and therefore pre-labelling screen time as meaning time spent on such devices, using social media specifically. As social media has definitely been my biggest window to the world. I personally level criticisms at the way people use social media as opposed to the platforms themselves, but this is a point of written about previously and something to save for a further post.
I make this point, purely as I want to make it clear that I’m aware that screen time can refer to things other than social media and the use of mobile phones and computers. it can also refer to, and often does refer to watching TV or perhaps listening to music. Again, if this is something you enjoy, I don’t believe it is something you should limit yourself to a certain time period. Why should your joy be limited by other peoples perceptions of it?
No, I make such statements of somebody who is able to make my own decision in the world and free use of technology. As somebody who understands what others might say, I would ‘be giving’ up in order to spend my time using technology. In other words, I’m fully aware what I could be doing instead of spending my time looking at his screen, others may not be. By others, I mean young children, not simply somebody you disagree with, people can spend their time, however, like whether you like it or not. Children are however a different story.
It is my firm belief that children should be given access to as many different things as possible throughout their childhood. This includes social media and other sometimes tabooed websites, when children have been educated correctly on their use and safety, as well as other screen focused technology. I don’t agree with banning use of any type of technology with appropriate considerations. In fact in modern society, given how prevalent the use of technology, and the Internet is, I actually think doing this would be cruel.
I could write about this topic forever, but I should get back to the initial question asked.
I don’t actively manage my screen time, I don’t see any need to. I live my life as close to the way I want to, as I can, and don’t listen to arbitrary faults the people place within it.
And to anyone reading this, you think I should be limiting or at least monitoring and managing my screen time in someway, I say this. Make the world accessible first, and then we will talk.
This climate, this post was written using both a screen and voice to text. I apologies for any mistakes in it that may affect the clarity of this post, please do let me know if and we change any such mistakes.
My Inaccessible Life 