Image Description: An over the shoulder photo of a buggies on the edge of a wheelchair space on a train.
As I write this post I am still on the train. It is worth noting that the buggy was moved so I could get in before the photo was taken. Before this, it was completely in the wheelchair space. The owner of the buggy is nowhere to be seen.
I know that children and buggies have every right to take up space, but please remember your buggies are optional, my wheelchair is not.
It’s one thing to leave your buggy in the wheelchair space with you there. But to leave it there while you go into another area of the train is even more surprising to me. Why would you do it? Why would you leave your belongings unattended like that? Is being in first class really that important to you?
While the buggy has been moved out of the area, it is now blocking the isle and other passengers. It is not as easy for me to move as it is for you to not leave you things in the way in the first place.
This time I definitely am. But telling the truth about this just seems selfish so I won’t.
It hurts honestly, when those close to me do things without considering me, even when I say it’s okay. I feel like I’m being left out, and sometimes that just really gets to me.
I know that living my life as a disabled person there is always going to be things I can’t do, there is always going to be things that aren’t accessible to me. If there wasn’t I wouldn’t be disabled. And part of me really wants to tell people that if I can’t do something they shouldn’t be doing it. But I understand how completely selfish that is so of course I wouldn’t do it. Of course I wouldn’t say I don’t want you to do that because I can’t. Why would I do that? But the truth is I really don’t want you to do some things because I can’t do it.
It makes me angry and upset, and quiet. I’m not really sure what more to say about this situation. I’m sorry that I’ve not said more. But I think I’m still angry, whether at myself or them I’m honestly not sure. I want to say I’ll write more later, but if you’ve read this blog for a while you know I would probably forget.
I’m also not having a shower tonight, and if I’m honest the definite reason behind that is because I do not want to get more in there way. I do not want to take time away from them having fun by showing, because that honestly just doesn’t seem fair to me.
As I write this, I am underneath two blankets, one is heated the other is not, the nonheated one is over my head.
Image Description: A closeup selfie, cut off at the nose. I am looking slightly off to the left of the camera, a white blanket covering the top right of the shot.
The heated blanket under the quilt helps to warm me faster. It gets pretty hot under here. But the heat helps enormously with pain, after being out in the cold.
I have not long gotten back after an over night trip, which has required me both to sleep in my wheelchair and to not get changed for more than 24 hours. Rail replacement buses and the joys of travelling on a Sunday, were also part of the, adventure.
I plan to write more about this in a future post, because it’s been an experience, as it usually is. But right now, I need to try to chill for an hour or so until the carers come and I can get into bed and properly relax. I just don’t have the energy, unsurprisingly, to go into detail about all this right now.
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.
I got stuck today. It wasn’t the first time I’ve been stuck and it definitely won’t be the last.
The person I was with when I got stuck was unable to help me and so I called someone who could. While I was on the phone to the person who was able to help me some people came past and heard that I was stuck and offered to help me. They were able to help me and I was able to get home without having to call anyone to come rescue me. I’m really glad but I didn’t even want to come get me and grateful that they were able to help. But this isn’t really what I want to write about.
What I really want to write about, is something that the people who helped me said after they had helped me. Before I mention what this was, I want to say that I know they didn’t mean anything bad by what they said. And I’m very glad that they were able and willing to help me when I needed it.
One of the group mentioned that they’ve been unable to fix something earlier that day. And that they felt like they needed to do something good in the day to make up for being able to do what they couldn’t do earlier. You can see where this is going right? I was that good deed for them to complete today.
Well, the most important thing is that I’m obviously safe and well, and it is good that they feel good for helping someone. This kind of thought process does worry me a little bit.
I guess I just don’t like the idea of being someone’s good deed, a tick box thing for someone to do. How many people in wheelchairs if you have you helped lately? That type of thing.
I hope one day we can get to a point we’re helping people is not about how good it makes us feel. But maybe that’s a little too optimistic.
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.
Video Description: The video shows the view from a balcony at the back of a concert. The text “ Quick question, how would you feel if this was your seat when you arrived 3+ hours to a venue and were literally the first people here?”
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.
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.
I wouldn’t pay any amount of money, as I don’t think I really want to go to the moon.
I say think as I’m honestly not 100% sure. When you’re disabled and you’re asked about a question massively impacted by your disability it can be hard to answer the question honestly. I think sometimes my brain tells me that I don’t want to do some of the things I can’t do for my own sake. As wanting things I can never have all of the time is emotionally difficult to deal with.
But, like I said whether I want it or not, this type of question isn’t even something I get to really think about. I’m to busy thinking about getting the difficult things in life to even consider somewhere else entirely.
I don’t want the money to go to the moon. I want the money to have a home that’s accessible to me. I want the money to not have to worry about bills. I want a solid income to live a comfortable life. The same as most of us out there. I don’t really want the money to go to the moon.
Additionally this planet isn’t accessible to me, why would the moon be?
When was the first time you really felt like a grown up (if ever)?
I really wish I had a better for this question, but I just don’t.
I want to say it maybe it’s the first time I made a phone call, and I didn’t even ask my dad if he would do it for me. Phone calls are always something I have struggled with, thank you very much anxiety for that one.
Maybe it was the first night I spent in my own flat, though that just seems like a cliche, and honestly as I write this I can’t even remember it.
Maybe it’s the first time I got lost, and didn’t need to call my parents to get home again. In fact I have to say that didn’t cross my mind.
It’s weird being a disabled adult, having grown up as I disabled person. At least in my experience, you are told one day you’ll be an adult and be able to do what you want whenever you want, while constantly being reminded that you’ll always need help from others.
It’s bizarre to know that there are some people in the world that will never see me as an adult, just because of my disability. To be in situations where people still look to my sister or whoever else I am with, before me.
To know that no one expects me to be a proper adult. That the idea of being seen as one is inaccessible to me. And while you might see the term, a proper adult’ and think it is nothing more than a social construct. You are right, but so is an adult and adulthood, and I promise you the idea of proper adult is just as real as the idea of any adult. Take it from someone who has to fight to be seen as either, who the world still wants to see as a child. Adulthood feels inaccessible.
It’s extremely difficult to know that the only way I’m going go be seen as adult is by believing I can be one and therefore acting like one. While at the same time definitely not feeling like an adult. No one but me is pushing me to be a proper adult, and that makes it hard to be anything close to an adult sometimes. Honestly no one would care if I stopped trying to be seen like an adult. So I have to care.
That said, I don’t know if I’ll ever truly believe I’m an adult. For that matter, does anyone? Do you, whoever you may be reading this, believe you’re an adult? Do you think that you’re own belief in whether or not you’re an adult, effects whether you are treated like an adult? Proving that you yourself are not from a infantilised minority, like those who are disabled, I can’t see how it would, but I would be interested to know.
I don’t know if I’ll ever truly believe I’m an adult. But I know that I owe it myself now and to my younger self to try to believe it. To act like an adult, so I’m treated like an adult. To act like a fully formed person, so others see my value as one.
Was it Shakespeare that said “all the world’s a stage”? That is a genuine question, don’t be mad at me but I really can’t be bothered to look that up right now. But I think what that means is that everything’s an act, that everyone is acting. That everyone is pretending to know what they’re doing in life. When really none of us know anything at all.
So maybe we’re all just secretly children pretending to be adults. I know I feel that way most of the time. But my life has taught me that it’s more important for some of us to be better actors, to perform on stage better, than others. Though maybe if we’re all aware that we’re acting, there might just be a little less stage fright.
Your life without a computer: what does it look like?
I know computers, the internet and social media can often get a bad reputation, mainly due to bullying. But in all honesty, for a long time, social media was how I accessed the world around me. For all the bad I struggle to see how computers can be anything more than a positive.
I’m fortunate both in my ability and living where I live, that I now have much more of an active in-person social life, than I did when I was younger. However, there were many ways to make friends online.
So to be honest to put it bluntly, my life without computers, looks boring and isolating.
My Inaccessible Life 