I spend a lot of time seeing little problems in my life that I want to fix, but I can’t.
Little things, like when a floor needs cleaning, and yes that’s a real example that sparked this post. Little problems that are actually easy to fix, but I just can’t fix on my own.
But the person who I’m often with that could help me fix the problem, doesn’t have the same inspiration of desire to fix the problem that I do. And because there who I need to fix the problem, it doesn’t usually get fixed.
I know I owe a lot to the people in my life that help me. But it gets frustrating when they can’t, or won’t, help me the way that I want to.
I can understand how that makes me seem ungrateful, but there’s only so long you can be grateful for when you need so much help.
Fixing most problems is something that is inaccessible to me.
It’s makes perfect sense that everyone needs a break from things. But sometimes it’s difficult to know that you’re the thing that someone needs a break from.
Logically I obviously know this, but sometimes it can feel like you’re the problem for being something they need a break from.
I just wish I wasn’t the person people needed a break from. I wish I wasn’t that complicated for others to deal with. I wish I could just exist in the world without needing others. But it is the way it is. And I’m always going to need people. I just need to accept that and try to remember that that’s not my fault.
I’m not trying to make this about me, I’m trust trying to deal with the emotions of this so my emotions don’t affect them.
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.
So I think part of my trauma of living with my disability has developed in my need to know everything about the little things in life. It makes me feel like I have some amount of control over my life, when in reality I control so little. This doesn’t help when the person I live with lies to me about things.
I know its to make me happy and they mean well and it just small things. But when I find out thar they lied to me it makes me feel more out of control.
I have no choice but to trust them. But I just don’t know how to sometimes. Sometimes I feel like they’re lying to me even when I can’t prove it. And asking them to prove it causes problems with them. They get upset with me.
So I try to skip that and check on things myself. But they offer to step in and do it for me, or sometimes it is something I can’t check without their help. Either way, I can’t make them understand why I need proof of these things. Why I really want to see proof of these things? How much something so minor to them is stressing me.
I think the little things in life, like where the batteries matter when you’re disabled. And I don’t think that’s my fault that they matter so much to me. And I don’t think it’s their fault that they don’t understand why it matters to me so much, they also have some processing difficulties so they genuinely just don’t get it I think.
It feels like there’s nothing I can do to get out of this situation. I need there help. I need to rely on them. They just don’t understand what that’s really like for me. And how much trust that involves.
Yesterday when I was out someone offered to help me without my asking. And I know they mean well but honestly it made me a little uncomfortable afterwards.
I appreciate the thought but it makes me feel out of control to have people just step into help me without me asking for it.
Sometimes I would rather struggle and do something myself than ask for help. And I know that seems counter productive from the outside, but I’ve worked hard to find ways to do things myself and when others step in without me asking it ruins the way I’ve figured out doing things.
This is just a reminder that if you’re helping people without asking them first, that maybe helping them is about making you feel good and not actually helping them.
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.
I am the type of person that will be bothered by things at random points in the day. The things I’m bothered by usually don’t matter, they’re just inconsequential little things, like where my gloves that I don’t really need right now are.
The problem is my disability and the inaccessibility of the world around me means that I cannot go looking for these things myself. Therefore I am left reliant on those around me to do what must be frustrating and seemingly pointless, just to deal with the anxiety created by whatever is bugging my brain so to speak.
The frustration is very physical to me, like an ich I can’t scratch. It honestly seems to play on repeat in my head, heightened at the most unhelpful times, until I have some way to deal with it.
Equally annoying is what these states of discomfort can be triggered by. For instance I just got triggered from reading a Facebook article. That wasn’t fun.
So today I spent a significant portion of time figuring out how I could do something in the most simplest way possible. The instructions for which would be pretty easy for most non disabled people to follow and complete.
I then decided I couldn’t do it, and so spent an even longer period of time seeing if I could justify paying someone to do it for me.
Exactly what I was trying to do is not important to this post. What I’m trying to explain is the general understanding that I as a disabled person often have to pay for things to be done that non-disabled people are able to do themselves, and can therefore do for free. The cleaners that I have come to the house, as I have written about in a previous post are one such example of this. But there are many of them.
This is known as the disability tax, or the extra cost involved when you live in an inaccessible world as a disabled person. In the UK the disability benefit known as Personal Independence Payments (PIP) is supposed to cover such costs. But unsurprisingly it doesn’t cover it, but it does help, and this is the reason you can still be on this benefit while in employment.
Sometimes it feels like everything falls into this category of “things I need other people to do for me”, whether or not I have to pay for it. And if I’m being honest today was definitely one of those days.
Sometimes the cost of the disability tax, of the Innaccessiblity in society, is emotional as well as monetary.
You know when they say that you think of things at the most inappropriate times? I think it’s probably referring to something sexual. However, I think this can also apply to be disabled.
Rather than inappropriate a better word might be inconsiderate.
As a lay here in bed, several things in my life that need doing, pop into my head. Now I have already asked for these things to be done, but whether they have been is another question.
In the grand scheme of things these things are all minor. But my brain is telling me they need to done now, even though logically I know they don’t, that I can’t do myself.
But the idea that things I can’t do myself need to be done right now, just won’t leave me alone. And this is what I refer to as the inaccessible itch. The itch of things I would be able to do if I wasn’t disabled.
I hope I can get some sleep soon. The problems can be solved and checked on tomorrow, and I need to sleep.
You see someone close to me referred to the fact that I have cleaners and that is a sign of not having a hard life. From an able normative perspective, I can understand this. It’s easy to jump to thinking I must be in a lucky position to have cleaners do the work for you, or something along those lines. While I understand that I am lucky to be in a position to be able to afford cleaners, for me they are an accessibility need.
They are a service a pay for as contribution to my house. They are necessity. While I’m not doing the work myself. I, through them, am still contributing to the upkeep of the house.
This is not to call anyone out who chooses to have cleaners, who may not exactly need them. But just to remind you that not everyone who uses a service that anyone can use, is choosing to use them. This happens with delivery options on systems as well.
What may be the easy option for some, maybe the only option for something to be accessible to others.
Both deserve not to be judged for the way they use the system they use.
Remember needing help and taking that help is not a bad thing. Its okay to need help. Even if you could manage something, rationing you energy in the best way for you is never a bad thing.
My Inaccessible Life 