Even the most generous person will argue against helping someone do something when they have to help them a lot.
I’m not talking about the necessary things, I’m lucky enough that I’m always supported in those. But often the little things, are an argument. And they’re an argument I lost this morning.
I wanted to walk the dogs first thing in the morning, as I both like to get it out of the way, and also think it is better for the doggies. But as I need someone else to go with me, to help, if they don’t want to go that early in the morning, we don’t go.
Honestly my day got worse from there. Sometimes I just hate not being able to do things for myself. Today is definitely one of those days.
Incontinence can be a real treat if you know what I mean. And sometimes I can be incredible unlucky and have issue multiple days in a row, which unfortunately creates a lot of washing, for obvious reasons.
Now I’m not the one that does my washing. In theory I could do some of it, with our current set up. But I would not be able to do a full load of washing, this is currently completely impossible for me to do, due to inaccessibility in my house.
However, even if my house is more accessible in this area, it doesn’t mean that I would be able to complete a full load of washing. I don’t have a physical energy and strength required to do so on a regular basis. And unfortunately, I definitely do not have the strength and energy to keep up with the washing that I produce.
What I’m saying, is that regardless of my set up, I would always be relying on someone else to do my washing. Which leads me to the same problem, I have with needing to be reliant on others to do things for me. I’m relying on them doing it the way they’re going to do it. And I can’t really complain about it.
This is a common occurrence for anyone that is regularly relying on others for help. If you get lucky, you are sometimes able to ask people to do things a certain way for you. But the chances of this happening with regular everyday tasks is unlikely and definitely not possible for me. It actually risks me having any help at all. If I argued every time something wasn’t done the way I wanted to.
Sometimes you have to pick your battles. When you need a lot of help you have to pick your battles a lot of the time.
To anyone that doesn’t need a lot help, this might sound horrible and ungrateful. And in all honesty, I understand where you’re coming from with this opinion. But I have to say you’re wrong.
When you need a lot of help the only way you can get any say or control in your life is by specifying questioning how that help is done. Can you imagine if you didn’t get to say anything that goes on in your life? How difficult that would be to deal with emotionally. That’s what people need help a lot of the time, myself included, are stuck dealing with.
It’s a balance of control, and gratefulness. And the gratefulness gets old.
It’s not that I’m not grateful, it’s the being grateful all the time it gets old quickly. h
I hope you understand where I’m coming from and it doesn’t sound too horrible.
I recently bought a new washing machine, that currently sounds like it’s going to fly out of my kitchen. There’s a problem with the water pipe in the back of it, and while I understand from what I’m told how to fix the problem, I am not in a position to do that at all.
This is a regular occurrence for me, understanding a situation but not being able to act in it, so you would think I’m used to it. I’m not. It’s almost always hard for me to deal with. It’s definitely hard for me to deal with right now.
I am lucky to have a lot of help in my day to d ay life. But with needing that help comes the reality that you are unable to control the help. This is where you get to be mad at me for sounding controlling, but let me defend myself for a minute and say I think it’s more like lack of control.
When there’s a problem, I want it solved. When I can’t be the one to solve it, I have to wait.
And I know this is something that everyone deals with, but for me, it’s different. For me, it’s almost every problem, and certainly all the physical problems, that I need to go to someone else for. That I have no choice but to wait to be solved.
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 had a visit from someone to find me some kind of different seating to spend some of my time in, as it isn’t good to spend all your time in the same chair. And she suggested w few other adaptations which could benefit my sister in the home.
I feel a little guilty, because while she was focusing on my sister in some areas, I was almost completely focused on myself, and how what is being suggested will also be beneficial to me.
The way I see it it’s more important that this place works for me than it does my sister. As I’m unlikely to ever move, however this option is open to my sister should she choose to take it.
So I am being selfish, I think, a little. But I have to be. Everywhere else inaccessible to me, I have a right to focus on myself first, on where I live being accessible to me. I shouldn’t feel guilty about that, and yet I do.
That said, what’s been proposed will help, both of us. So that’s good. And my sister seems to understand why I’m being selfish in my thought process here which is even better.
I also struggled with the extent to which the conversation discussed what I need from her, but that’s something else that I don’t really want to think about right now.
I’m trying to deal with all this while also organising the rest of my life, the organisation of which is not up to me. As aell as dealing with the few elements of my life that are within my control. So let’s just say there’s a lot going on right now.
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.
My Inaccessible Life 