Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
What personality trait in people raises a red flag with you?
Seems pretty obvious I know, but it’s hard to trust a liar.
It’s the little lies that really bug me, and I often can’t verify due to my disability. But it leaves you doubting people and not being able to verify anything.
Just tell people the truth, especially when they trust you, especially when they have no choice but to trust you.
I know I’ve written about this one before but it’s really bugging me again. And in true deflecting me style it’s not even the biggest problem I have to deal with now but we’re going with it anyway.
I think I’ve lost a bottle of pee.
Now in my house that’s not as stranger sentence as it might seem. Given I use a catheter to empty my bladder into a plastic bottle. I have been known to loose said bottle of pee in different areas, both in and outside the house. Now this post is less about the hottie of pee and more about the fact that I’m unable to look for it myself.
Now because I can’t look for this myself I always feel like it hasn’t been looked for properly. Years of mistrust slowly creeping there. And there’s very little I’m able to do about the entire situation, that in itself is the most frustrating part. If I could look myself, I didn’t find it, I know I would’ve tried my hardest. I can’t know that for certain of other people.
Being disabled as essentially having trust people throughout your life, at least for me. You don’t get a choice about needing their help, and you need it whether you trust them or not.
A lot of people lie to me. It’s a lot of little lies.
I’ll be here at this time – they’re hours late.
Yes I did that put it away – it’s still on the table.
I left it somewhere- it’s somewhere else.
I hope you get what I’m talking about. All these little questions that I have to ask people because I cannot check for myself, or because I’m waiting on them to help me. And yet I’m often lied to. Sustain
I don’t think they lie to me on purpose, I think they think it won’t matter or it won’t bother me. Neither of those things are true it does matter, and it will bother me. It will only bother me because they lie. Even if the truth is worse, at least it’s still the truth.
I have relied on people for many years, for all my years. And I will rely on people for the rest of my years. I don’t think it’s to much to ask that they don’t lie to me, but they tell me the truth.
I know, it might seem silly to get so caught up on such small lies. It makes sense to be bothered by the big things. The small things seem so unimportant. But I think it works the other way around, at least for me. The big ones seem like lies everybody gets, the one day I win the lottery lies. The little bits of hope in the darkness. The little lies seem made just for me. Like someone else is trying to decide what truth I have access to, what life I get to live, and that I do not like.
I just want to be treated the same way as everybody else, with the same respect, the same honesty. Is that really too much to ask? Or am I actually being treated that way? Is everyone being lied too like this? I just don’t know? If that is the case, do I really have a right to be upset? Or does my right to be upset by this come from the fact that I do not know? I’m honestly not sure.
I don’t think it makes it right, even if others are being lied to. I believe they deserve the truth as well. We all deserve the truth. That no one else should get to decide what we get access to.
Why is the truth that hard for people.
This one’s going to make it seem like I’m a horrible person, and maybe somewhere I am. But I need to do something with these feelings so here goes.
I doubt I’m unique in feeling this, I doubt any emotions are really unique. But perhaps I’m the only one willing to say that I feel this way.
As someone whose existence has taken many opportunities from them, watching others mess up the opportunities that they have is hard. Not least because I know that I will never have those opportunities myself.
I know what people say, that it’s easier to see how things are done from the outside, and think you can do it better. And while I don’t disagree with this, that a lot of my confidence may actually just be ignorance of the difficulties others go through. But there are certain situations that I think it’s not novae to say I’d do better in.
The irony is I think I’d only do better, because I understand the steps involved. And I only understand the steps involved now because I am on the ouside of the situation right now.
One example to try to explain what I’m talking about, would be to consider those who loose things or have important things become damaged. I think that I’d be better placed for this not to happen if I were physically able to do so, but only because I have thought about it at length. And I have only thought about it at length because I lack the physical capability to do it. I hope this makes sense.
Maybe this post is simply me dealing with my ignorance and emotions. Maybe I really wouldn’t be able to handle situations as well as I think I could. But the truth is as I will never find in myself in the situation where I will be in complete control of such a situation, I will never know if I will be any good at it or not.
Trust me when I say this example is an incredibly simple one. This can be applied to more complex and life altering situations than not loosing something.
My frustration at never getting to try certain things, and watching those that get the opportunity to do so, sometimes feels never ending.
And I know that it’s judgemental of me to think this way. I would never put this on anyone I know, because that’s just not fair. I am also very aware that people are trying there best. But I still can’t escape feeling this way.
I’m sorry to anyone I upset with the post. That was not my intention.
Is there an age or year of your life you would re-live?
There are times in my life that I look back on and think that they may be easier than some of the things I’m dealing with now. Don’t we all do this? Is this not where the expression of rose tinted glasses comes from?
I’m also reminded of how hard things were in other ways and how I definitely would not want to relive those parts.
I don’t think the easy parts of my past are worth the hard parts.
And while the future is always unknown, and that can be difficult to deal with. At least I know that I do not have to deal with the bad things in my past, in the same way, ever again.
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.
I swear there’s no other job that you can lie so much and it somehow be expected. It makes no sense.
I really dont understand why my carers can’t just tell me the truth.
All they would have to do is be honest with me about doing the job they agreed to. And yet they don’t, they’re late and they about it. And I feel like I’m the horrible person for being so upset about it, for simply expecting them to allow me to live my life.
I’m trying to think that they’ll be one day that my carers won’t limit what I’m trying to do. But sometimes it feels like living any sort of independent, accessible life is impossible.
I’m just tired.
Tired of trying.
Tired of my trying not working.
Tired of it being so hard to try.
I don’t feel as disabled as my carers often remind me that I am. I don’t think they’re used to that. Someone that wants and believes they can live the life they want, or at least as much of it as possible, that is as physically disabled as me.
I don’t know when my carers are not going to be a problem. I need them. But I also want so badly to be free of them.
For now though all I really want is for tell me the truth.
What’s your favorite thing about yourself?
Sometimes this is an easy question to answer, but it seems not today. I honestly don’t know the answer right now, sorry.
Usually, I would say something like my emotional intelligence, but it honestly feels like that might be doing me more harm than good at the minute. Or my honesty, but it’s hard to be proud of that one when it feels like t cares other than me about the fact I’m being honest or trying my best. And it feels like I weakness when a lot of people around me seem to lie so easily and not to care about doing it. I wonder why that isn’t something I can do.
I really tried with this one but I just don’t know what to say, sorry.
I’m pretty sure my carers lied to me again. They told me that I was their last call and wanted to come early because of that and then proceeded to be half an hour late when I said they had to come on time. And while I admit that I have no way of knowing whether the carers were lying in tbis instance. I have caught them in a lie before.
Honesty is important for everyone. But it is especially important when you find yourself relying on others, like I as disabled do. If you lie to me I often have no way to verify what you’re saying. I have to take your word for it. This applies to carers or anyone else. The world can literally be more inaccessible to me if you lie to me about it. This issue extends far beyond my actual carers, though I’m pretty sure it’s in their job description (or it should be) not to lie to their clients.
There’s a long list of places I have investigated the accessibility of, only to get there and find the place itself is not accessible. Sometimes this is very obvious access issues like say a step, which I didn’t think you could misidentify as an access problem but apparently you can. Other times it can be a more complex issue that I wouldn’t expect someone to be aware of, like the size of my wheelchair or the turning circle that it needs.
Back to the step for a second, because that was an interesting story, to say the least. I was told on more than one occasion that a place was accessible to me, despite one place having a step at the door, and the main part of the other place being on a whole other floor, with only steps to access it. On both occasions, they gave the reasons that they thought they would be accessible because the space in the business was big enough for a wheelchair user, once they get over the step. That’s a pretty big barrier to accessibility. To make things worse on both occasions I asked directly about step-free access. On one I only found out once I got the business, on the other I thankfully discovered it after a closer look on Google Maps so didn’t waste as much time.
The point of this post is to say please just be honest. Be honest too everyone, but especially those who rely on that honesty. Even if the truth is annoying it’s less annoying and to be frank less hurtful than a lie.
My Inaccessible Life 