Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
Sometimes there’s a lot to say, but you don’t know how to say it.
Sometimes there’s nothing going on and it feels like everything.
I feel like I’m stuck and I don’t know if it’s worse when no one wants me to achieve or when everyone wants you to.
What I want from life doesn’t seem to matter. What I want seems impossible.
I often drop lotto things on the floor that I can’t pick up myself. It bugs me and there’s nothing I can do about it. The person I live with doesn’t notice little things on the floor, so asking them if they can see anything on the floor isn’t a completely fool proof way to find out if there’s anything on the floor.
Relying on people is emotionally draining. Even when you know they’re trying their best. In fact I think when they’re trying their best it makes it worse, as you know you logically it’s not fair to be annoyed at them.
So I become annoyed at myself for being unable to solve my own problems and therefore relying on them.
It’s difficult to say whether this is because I’m disabled or because I’m relatively poor. The two are very intertwined for me.
Tonight I had water come through a light at home. It’s been temporarily made safe as an emergency. And while it will be fixed at some point in the future, it will never be made to look as if it didn’t happen. That’s never a priority of the social housing.
Don’t get me wrong I understand why, of course. But just because you understand why something is the way it is, doesn’t mean that you have to like it that way. And because finding income is shall we say more complex for me, in no small part because of my disability, there’s nothing I can do about it off my own back.
I’m stuck with the minimum. Not to sound ungrateful, but the minimum gets tiring.
At least I have four walls, heating, electricity and food. And most importantly my babies are safe, and as well looked after as I can make them. I know I need to be grateful. But watching everyone else have the house they dream of, have a house they feel like is there’s when I can’t, is just hard.
My fur babies are the greatest thing in my life. A lot of the time they feel like the only thing that gives my life meaning. That doesn’t mean I’m perfect in the way I care for them, but I always do my best.
I have to have carers, I hate having carers, I am never going to want to have carers. They feel like the bane of my life a lot of the time. They are so necessary for my existence, yet they make me feel incredibly disabled a lot of the time.
I’m going to admit that my babies aren’t the most well trained, particularly with oldest girl, she has a lot of accidents. I can’t and don’t criticise her for it because it isn’t her fault. But I’ve had carers in the past do that.
My house is clean, but sometimes things are missed for a little bit that’s the way it is. But my carers have complained before about this, and gotten me in some trouble with social services. Lets just say that recent events have made me concerned that they might end up doing the same again.
When you have to have strangers in your house, it can feel like the state of your house is judged a lot. My house is also there work place, particularly my bedroom. I literally have no space in the world that is just mine, and I hate that.
I can’t live in a house that’s a mess, without someone complaining, and I can’t do anything about the mess,. Additionally, what some would see as a major source of that mess, are the only part of my life that I would enjoy.
If I had to choose between my babies and the carers I would choose my babies, but making this kind of choice is something I know that I would suffer physically for.
The truth of the matter is I don’t want carers, I don’t want to have to live with anyone. I want to live on my own in the middle of nowhere, in a campervan, with my babies. But that is never going to happen. I’m never going to be able to be on my own. And I hate that.
So because I have to, I accept that I need carers. And if you don’t really know me that well, you may think that I’m perfectly okay with that. I always try not to cause more problems in life, and that includes complaining about a situation like having carers, to the carers. Honestly the carers I have could show me the same curtiousy, they spend a lot of time complaining about there job in front of me, but that’s beside the point. This politeness has been ingrained in me, and that’s another story, but it doesn’t mean that I’m okay with the situation. And i think I deserve to have somewhere where I vent the true feelings of this situation.
This blog, and my Tiktoks are places that I’ve found that have given me the space to be able to do that. That have given me the space to be able to be more open and honest with my emotions. And I feel like my carers recent intentional vialation and judgement of my me throug my Tiktoks have taken that from me. I checked by the way, she went back months to find dthe tiktoks she had issue with. For the record if it wasn’t obvious, I never include names of carers or companies in anything I record, write or say publicly, but you wouldn’t know that from the reaction I’ve had recently.
Now I feel scared to be open about my feelings publicly and to people that don’t know me. I feel like I’m back to pretending I’m happy with things I’m not happy with, just to make sure other people are not upset. I’m also worried that the carers can use the current situation to spite me and cause some real problems in my life.
For the timebeing I have privated my Tiktok account, and have made steps to block all carerers that attempt to follow me. One of them actually did add me, which I’m pretty sure is not proffessional. This is part of why I’m writing this entry. To keep opening up, and not letting people win, just because they have feelings about how I feel.
So I guess I just want to say, that just because things seem easy, because people have to do things, because they look like they’ve accepted things. Doesn’t mean any of that is true. Life is hard. Having no control is hard. Being judged is hard. These things, at least in my experience don’t get any easier.
I’m someone that likes to spend a lot of time in my house, but it’s different when you don’t have a choice in that.
If you ever look at that too closely at my situation, you might come to the conclusion that that is because the world outside is difficult for me. There is a lot of inaccessibility that I face on a daily basis. Far more than I will ever have the time or energy to process let alone write about.
There is just some stuff you just have to ignore to get on with your life. But it’s impossible to ignore everything, and I don’t think I should have to just make everybody else feel better. This is why I started to write about and share my experiences.
Today is one of those days, where I can’t ignore my experiences of inaccessibility. The inaccessibility I’m facing today, and my lack of choice in this, is obvious today. As the picture below shows, today is a snow day.
While I have cropped this photo to protect my safety and not give too much away about where I live. The original photo also showed how my garden and the pavement and road outside my home were also covered in this amount of snow.
This may not seem like a lot of snow, and I completely understand that depending on where you are in the world it actually isn’t. But when you use a wheelchair it doesn’t take a lot of snow to make going outside incredibly dangerous. So I’m going to be stuck in the house.
Now I had no plans to go outside today, I’m actually waiting for something to be delivered. The only thing I really had to do was walk the dogs, but they’ll be fine for one day.
But now I can’t leave the house, and this isn’t just a choice, things feel a lot different.
Choice matters. And just because someone is doing something that you wish you could do, like staying at home, doesn’t mean they’re doing it by choice.
Today the world is inaccessible to me because of the weather. And that means there’s nothing I can do about it, but wait for it to pass. Maybe tomorrow will be different, but we’ll just have to see.
I hope you get to enjoy the weather wherever you are, and have the best day you can, whatever that looks like for you.
Tonight I’m going to a family party, I have mixed feelings about this for a varsity of reasons.
It’s going to involve me spending the night in my wheelchair and I’m honestly not looking forward to that. But I swear it feels like my body knows I’ll be doing that. My legs are hurting already, and I’m not even in my chair yet.
I’m also hoping that I can poo within the next hour, because if I don’t anything I do after that I’ll be stuck in for more than 24 hours. The joys of incontinence.
The next 24 hours of my life, are going to be as uncomfortable and rough as they are fun.
I’ve got to use ramps that scare me, sleep in my wheelchair, where the same clothes. And I know I’m going to be in my pain.
Just because something will be worth it, doesn’t mean its going to be easy.
Part of me can’t wait to come home to my girls honestly, and I haven’t even left yet.
Given how much help I need on a day to day basis, you would think I’d be okay with asking for help. But in all honesty, I still struggle, even when I pay for it.
I have a cleaner come semi regularly, which I pay for. And I still don’t like needing their help, even though they agreed to it, and I pay them.
The only help I get that I’ve become somewhat comfortable with is that from my family or carers. And I think the only reason I’ve become okay with it is because I don’t have any other choice. That said there has been times I’ve injured and burnt myself, rather than ask my help
So this is your reminder that even even people have a lot of help, they may not be comfortable needing it. Regardless of how much help someone has or how long they’ve had it for. Asking for help can be big step for others.
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.
Everything seems to go wrong at the most inappropriate time to go wrong. I promise what’s happened is now there’s dramatic that opening sentence makes it seem.
As I write this, it is nearly 5 am, I’ve already had to call for help once to get the remote control for my bed off the floor. I dropped it again, but was able to pick it up using a charger wire. Sometimes you have to be inventive when a problem needs solving in the middle of the night.
I dropped the remote for the second time, trying to look for a charger that I don’t even need. But the fact I can’t find it and I know that I had it makes me feel physically more comfortable than I already do, hence why I was trying to look for it.
Now I have help, but I have a rule that in the middle of the night I only ask for help when it is something very important. This much of a problem in the middle of the night. In other words, I didn’t think it was fair to wake someone else up for something that can wait till the morning. There’s only two things that constitute not being able to wait till the morning. One is dropping my control, as without the ability to move my bed in the night, I wake up in a lot of pain or I’m unable to fall asleep to begin with. The other is, if I’m falling out of bed, I would hope that one is self-explanatory.
Using my own rule, I felt comfortable given the time getting help. But angry at myself that I needed it so soon again after I did the first time. my experience of being disabled often seems to come with a lot of being angry at myself for things I can’t control.
I think this is why I get so distressed when I can’t find something, like the charger I was looking for, regardless of the time. I don’t even need the charger right now, I’m just frustrated that I don’t know where it is. The most annoying thing is that I know where it’s likely to be because I can’t find it. That is either on the floor where I can’t reach or caught in my bed, where again I can’t reach. It’s illogical for me to think that it is lost completely. And while I know this, my strong need to find it, seems to overwhelm me. I know this is stupid. I know that logically, I don’t need to find it right now, but still, I feel like I do.
But I think I get so distressed, because losing things, no matter how relevant they are represents the lack of control I have in my life. I’m annoyed that I cannot be the one to look for things when they are lost. Therefore losing something is even more distressing to me. These feelings are often amplified in the night, when I don’t feel able to ask for help, or when I am alone and I can’t ask for help.
I wish it didn’t bother me so much when I can’t find something, but knowing I don’t really need the item doesn’t change the factory I’m distressed by not knowing where it is. I’m trying to avoid the thought that if I was not disabled, I would be able to look for this charging right now on my own, despite the time. Logically, I know I should be thinking more along the lines of the fact that it is not my fault that finding this charger is inaccessible to me. But it’s hard to be logical, where internalised ableism is concerned.
I’m so tired. Despite how much I have slept during the day yesterday, as I mentioned previously. But I can’t sleep. All because of a stupid wire.
I am also now in more pain than I was earlier from trying to look for something I don’t really need. I don’t think this is helping in my lack of ability to sleep at this time of night.
It doesn’t even matter, at 5am this doesn’t matter, and yet. Why can’t I find it.
What is the greatest gift someone could give you?
I don’t think many people do.
I just wish people would look at me and see a person, not someone in capable of various things.
Just see me as a person who’s trying to live my life just like you.
Years of people seeing me as a disabled person, has had a bigger impact on me than I think I sometimes realise. I struggle to see myself as anything more than my disability. And I struggle with other people, having issues that are shown a lot more respect and understanding that my own issues are shown.
If people just saw me as a normal person with issues, just like everybody else. And not as consumingly, magical species of disabled person, that’s supposed to have eased living differently. I think I would do a lot better emotionally in my day-to-day life.
I’m not perfect, no one is. Things are difficult for everyone. Just because I haven’t known anything different doesn’t make this easy. You expecting it to be easy makes it more difficult. I’m trying the way everybody else is.
I’m sorry, if this post is a bit all over the place, I think I’ve got a bit emotional with it.
My Inaccessible Life 