What part of your routine do you always try to skip if you can?
Do I even have a routine?
I’m honestly not sure. I like to say I’m organised but I honestly feel like I’m pretending all of the time and I’m not actually that organised.
I would honestly skip anything that requires physical effort, which is pretty much anything when you think about it. That’s the joys of fatigue for you. I’m always tired.
But I try to do as much as I can on the important days, and to be honest I think that’s enough.
Like most things it’s only when I see how well other people can function over me, that I think the way that I function is not enough. But logically I know that means I just need to stop being bothered by what other people do and what they think about what I do.
I think I’m quite a busy person and to be honest I like my life that way. When it’s busy I don’t have the time to get too caught up in everything else. But some people might think that I’m not actually very busy when I explain to them what I do on a day to day basis.
I think the biggest part of this is because I don’t work, but this is not for lack of trying. Just because I don’t work doesn’t mean that I’m not busy. Living life gets very busy very quickly in my family.
And so when I can I like to take a day just to do as close to nothing as possible. Obviously my dogs still get walked but that’s the only reason I go out. The rest of the day is spent catching up on sleep. And maybe if I can find the energy and motivation, writing. That’s what today is.
So this is your reminder that if you catch people on a day where it seems like they’re doing nothing, they may still be busy. Busy resting. Busy getting on with life. Being busy means different things to different people.
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.
As I write this I’m sat with my brother in my room waiting for my dad to come and pick him up. This morning he asked me if it was okay if he let himself in to my house when he got here. And of course I said yes because that just makes things easier for me.
But instead of being struck by a sense of independence that he would actually ask my permission to come in the house. I was hit with a sense of playing house. This idea that I will never be an actual adult and I’m always going to be pretending at being a grown up.
Why I do recognise that this is something everyone has to deal with, this imposter syndrome of adulthood. I think it’s harder to believe you’re an adult when you need help a lot of the time.
Not only being an adult but believing you’re an adult is a learning curve, and I’m trying. Today’s just not a great day for believing.
My response to someone’s Facebook post in a CNBC group that I’m in. I became really emotive while writing it and I thought maybe I’d share it with you all.
I know where you’re coming from I think. The idea that people thing any life is obtainable because you don’t have children is so deeply untrue. I’m disabled and poor. The entire world is built against people like me. Less than 100 years ago. I’d have been left for dead. So no I can’t just live my best life without kids. But even if that were possible, even if everything else lined up in the world to allow me to do that, none of it makes that the life I wanted. Any life I live, even if it one day becomes a good life, even if by comparison to others it is already a good life. Will never be the life I dreamed of, the life I wanted to lead. And there’s an element of grief involved in that. Feelings that need to be felt. Feelings that go without respect. Because at least you can…. No. I can’t. And thank you very much for just pointing out something else unreachable.
This is your reminder, and my reminder of a few important feelings. It’s okay to grief the life you wanted, it’s okay to have bad days where that’s all you can think about. Feeling how you feel doesn’t undo the good going on in your life now. Find ways to let it out. You deserve to be allowed to grieve, just like everyone else. You don’t need to be happy all of the time just because the rest of the world wants you to be. Your happiness is not something that exists to make everybody else feel better about their own life. Your happiness and your emotions are about you and no one else.
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.
What was the hardest personal goal you’ve set for yourself?
And how sad is that, when you really think about it.
I think the hardest goal I’ve set for myself is one I set accidentally, and one I will never reach.
For me, though I don’t like to admit it, being normal is synonymous with being non-disabled. And while I am aware that I can’t be non disabled, sometimes I try to be as close to that as a can be.
Sometimes I think this is why I push myself so hard in day to day life. As I’m trying my best to be the most normal, non disabled me, I can be.
And it’s not that I want to be able to walk or really not to be disabled. It’s everything else that comes along with that normality. It’s accessibility and inclusion. It’s a place to belong in the world.
And the ableism and exclusion in the world around me, mean that I have translated this into being non disabled.
So while I know that I’m going to fail in this unreachable goal of mine. Whether I like it or not I think I’m going to spend the rest of my life trying to get as close to it as possible. And I know logically that this is bad, that it’s letting the internalised ableism win. But unfortunately for me it’s also productive, which makes it hard to resist doing.
I just want to succeed, which I don’t think is a bad thing. But how I get there might end up being bed for me in the long run. But as what I’m doing now works, I guess future me will just have to figure all that out when it happens.
As I have said, I have Covid, and it’s weird to say the least. But I don’t want to make this post about Covid.
As I write this post as 2am I realise not for the first time in my life, that it can be incredibly frustrating to have your brain awake when the rest of the world is asleep. I want to do things now, that I can’t do until morning, but I can’t do them now, and in the morning I know doing what I need to do will cause me a lot of anxiety.
I’m aware this post doesn’t make a lot of sense, and I apologies for that. I don’t really want to explain myself right now, physically, I’m just to tired to write the length of post required to make this make sense. I could say that I will explain this when I have the energy, but there’s a few problems with that.
The first is that it really isn’t exciting, it’s just adulting. The second is I don’t know when I will have the physical energy to write a post long enough to explain this, I’m struggling writing this one. And the third is that by the time I have the energy to do this, I will probably forget to write about it anyway.
I apologies for the state of this blog right now, and these posts.
In what ways does hard work make you feel fulfilled?
But working hard at something to me means I do something that matters to me. Something that was difficult for me to do that I pushed through in order to finish it. It doesn’t matter to me what I had to push through of what I was trying to complete. Whether that was writing a really hard essay, or making a coffee. If I had to push myself through it, then it was hardwork and if I complete it I feel fulfilled.
Now this is complicated because its a fine line between pushing through hard times, and as a disabled person trying to overcome my disability.
Overcoming my disability isn’t something that I try to do, or anyone should aspire to do. My disability is part of who I am and I deserve recognition as in individual without overcoming who I am. Yet I take pride in working through a difficult task. And I don’t always get the balance between the two right. Between working hard and trying to overcome who I am.
My Inaccessible Life 