I’m getting my hair done over the coming days, and I’m worried.
I’m worried because I can’t follow the guidance exactly how I would like to. But I’ve tried my best. I can only wash my hair on certain days in the week and in the evening, due to my carers. But this isn’t something that someone would know about me without me saying. And don’t know how I’m supposed to bring that up to people who don’t me.
When you need help to do things, doing things when you want isn’t always an option. But I do my best.
I have to deal with the anxiety of this alongside the anxiety of having someone new cut my hair. This is the first time I will be paying for someone to come to my home to do it. As the family members that usually do it are unable to do it right now, or ignoring me.
I don’t want to risk going to a standard hairdresser as I’ve done this before and it’s been difficult due to accessibility.
Once I rang a hairdresser to ask if they were accessible, and they assured me that they were. However, when I got there, there was a step outside the building. I questioned this and their answer was that once so was inside the place was accessible. I pointed out that I couldn’t get inside due to the step. Their solution was to give me a free coupon for that Salon, the one I couldn’t get in.
So I don’t want to risk that again. This is why I’m using a mobile hairdresser. But it doesn’t come without concern for me, nothing seems to come without concern.
I have told them I am in a wheelchair, but I worry that they will just forget that. That they will say they can’t do it because I’m in a chair, or for some other reason I haven’t thought of.
Logically I’m sure it’ll be fine, but I’m still worried.
Anxiety sucks.
And I just wish that I was able to go into a regular hairdresser and get it done somewhere where I wouldn’t be a problem.
It’s difficult when dealing with a world that’s so inaccessible to you, to not blame yourself for the reason things are so difficult. Logically I know this is not my fault, but emotionally which is the side that always seems to win, its so much more difficult to deal with.
But getting my hair done seems worth it. After it’s done I just feel like I can breathe, if that even makes sense.
All this said, wish me luck for tomorrow. I honestly feel like I need it.
It may be a hodge assumption on my part, but I truly believe we all do irrational things from time to time. Like checking the front door is locked, or in my case the same spot on the floor is clean.
Just because you’re disabled, and doing these irrational things might be more difficult for you, doesn’t mean it takes away the desire to do them. I wish it did.
I sometimes wish I didn’t want to do the difficult things in life and then maybe my life wouldn’t feel so difficult. But in reality it means that I would have to do not want to do almost everything. Even then it doesn’t mean that I wouldn’t experience these feelings again. And I know no one can live a life and not do anything.
I want to check that the same spot I watched my the person I live with clean on the floor is clean, but to do that I need her help. I need her to put the cleaner in reach, and of course she asked why I wanted this. So when I told her the truth she got upset with me, as if I’d accused her of not cleaning it properly. This isn’t what I was doing. It’s just annoying me, and I would feel better if I could check it.
If I wasn’t disabled, or to phrase it from happier me, if my home were more accessible. I would be able to do this without asking for her help, and so I wouldn’t annoy her. But it isn’t so I have annoyed her.
Sometimes I just want to do things for myself, but that is almost never possible when you’re me. That really gets to me sometimes. To be honest it makes me feel like my own existence is inaccessible to me. But this isn’t the first time I’ve experienced this, and I don’t think it will be the last.
This blog is honestly one of the only places I feel truly free, and as in control as possible.
I’m going to try and do the floor now, wish me luck.
After writing this post last night ready to post this morning I discussed it further with the person I lived with and they cleaned the floor for me, meaning that I didn’t need to do it myself. I have some thoughts about that that I wanted to share as well.
So I didn’t have to clean the floor myself, which saved me physically, but I feel like having someone else do something for me again has had an emotional impact on me. I know I could have done it myself if I was given the chance, but sometimes when you visibly struggle doing something, people don’t want to give you the chance, I think that’s what happened here. They meant well, but they didn’t even want to let me try to do it themselves, and I didn’t want to upset them by arguing that I could do it myself. So I just let them do it.
It makes me feel like I’ve failed at another physical goal I have set myself, I feel like I’ve failed at something that’s so simple that I should be able to do myself. I just wanted to try, to have it done my way, and I didn’t get that. I’m trying not to feel to guilty about that honestly, but it can be very hard. To be honest with you, I rarely get the chance to have things done the way that I want to. But that’s just what happens when you need a lot of help from others, you rarely if at all get any control over it.
It sounds ungrateful, I know. But just imagine if you had no say in all the little things around you. If you couldn’t decide exactly how your coffee was made, because when someone does a lot for you, you can’t ask them to remake coffee that is just wrong. That’s to ungrateful.
It’s not being able to do the little things that really get to me. And that’s why I’m trying not to overthink the floor, remind myself it’s done now, and in the grand scheme of things it doesn’t really matter now.
I’m glad I have the help I have, I just want the space and time and access, to do things by myself sometimes.
First of all, I’m sorry about the title of these posts. I’ve been watching criminal minds and it’s making me feel… creative. Please don’t look too much into that.
Advance warning of things is very important for me as a disabled person. It’s the only way I can really exist in the world independently, or as independently as possible. When something is sudden, it can be accessible to me. Whereas with warning might have been able to do something about the inaccessible situation, and therefore make it accessible to myself.
That being said, I am aware that not every situation can come with an advance warning. And it is in these sudden situations that I find myself more likely to be at the mercy of my disability. In other words I am more likely to face inaccessibility in new situations. Which itself makes me more wary of them and explains why I prefer advanced warning of situations. But as I’ve said, I know this is not always possible, and I recently experienced a situation like this.
My area had a power cut recently, this left me with an unusable air mattress for a short period of time. But thankfully a small amount of increased pain and discomfort was my biggest problem during the short term without power. The most difficult part and the most inaccessible part of the evening happened before the power actually went out.
This night I was alone, just by chance, when there was a knock on the door that I was unable to answer. After learning about the power court, I now know that the knock was likely someone to warn me of this. But up the time I had no idea who was knocking on the door or why they were knocking, and this was very unsettling for me.
Note to self, I really need to replace my door camera.
But it wouldn’t have really helped in this situation, besides telling me who it was at the door. It would not have meant that I would be able to let them in or answer the door myself. And I know that I wouldn’t have felt comfortable to speak to them through the camera, even if it had this function.
There were two reasons I was unable to answer the door on this evening. The first, and the most important being that I wasn’t in a chair that I am able to move myself. This chair is what I refer to as my comfy chair, and is a wheelchair that is just that. The cushions are softer and it is able to sit me in different positions. But it needs pushing by another person, so I am unable to move it when I am in it.
The second wish I was able to answer the door is because of the babies. My lovely little fur babies, pictured below.
Image Description: This image shows my 3 pets lying on my bed, facing towards the camera. The first is my yellow Labrador Imogen, who is lay down. Next to her is my brown Cavalier, King Charles. Bella who is sat. Next to her is my grey cat Ellis who is lay down.
If I was aware that I was going to have to answer the door to somebody, I would ensured both that I was in my electric wheelchair so that I could answer the door. And that the animals were safely away, so they would not get out while I did answer the door. But if there is a sudden knock on the door, and the animals are not safely where they belong. I will likely not be able to answer the door.
Even if I were in my electric wheelchair which would enable me to try to put the animals somewhere safe, I generally don’t even try to door this when the dog goes. This is because I’ve had a lot of experience of the people at my leaving I am able to safely get to the door. So trying when I know I will fail, and they will leave, is simply wasted energy.
To anyone reading this, that may think that I shouldn’t have animals if they make me unable to answer the front door when someone knocks on it. Just know that I would rather have the animals, than answer the front door. Even without my fur babies, I don’t always get to the door on time, so while they make it more difficult, they are not the root of my difficulties answering the door.
When I order food, for example, I have to put the babies away before the food arrives and wait by the door. As if I try to get to the door after it goes, they will leave and the food will be left on the floor where I am unable to reach it. And yes, I learn this the hard way.
It may sometimes appear that someone chooses to make the world inaccessible to them, by a choice they have made, which seems to make the world more difficult for them. but it’s important to remember that everybody is entitled to live the life that they want to, to make the decisions that they want to make, so long as no one gets hurt. And that these decisions don’t need to be justified.
The world could be made more accessible for me as a disabled individual, and as someone who has fur babies.
Assuming that the person that knocked on the door was something to do with the power cut. I know that I am already listed on the vulnerable register for the people that provide my power. They could have a note section on this list which highlights those that need to be called as opposed to just have their doors knocked on in situations.
I just wish people thought about accessibility in emergency situations beyond having a list of those who need help. My name being on a list isn’t necessarily as much help as you might think it is.
It is also important to remember that the flexibility a person has in a situation isn’t always up to them. If they can’t be as flexible as you want them to be in the situation, don’t make them feel guilty for it. Especially if a little bit of common sense tells you that it isn’t their fault.
I want to be alone a lot of the time, at least I think I do. But my disability means that the times when I’m alone are often the most debilitating for me.
Take now for example, as I write this post I’m lay in bed, and I find that one of my chargers isn’t working. I have other wires but they are not where I can reach them myself. And while I could wake the person I live with, and they wouldn’t mind, this is not something I deem important enough to wake them after 12 o’clock at night for.
In the past when I have had a problem, but not a serious enough problem, I have created bigger problems that I deem worthy of asking for help for. For example dropping my bed control, without which I am unable to move in the night, which causes so much pain that I am unable to sleep. But that isn’t something I will be doing tonight.
No matter how much I find myself wanting it, being alone reminds me what I am unable to do on my own, it reminds me just how disabled I am. Being alone for any long period of time is always going to inaccessible to me. And sometimes, like right now, it is difficult for me to accept that reality.
I wonder if I do you want to be alone or if I just want to be able to do things for myself? Or if what I really want, is others not to have to do the things for me. While all those things sound the same, I don’t think they are. Wanting to be able to do things for yourself and not wanting other people to do them for you or different. One is about independence the other is about being a burden to those around you.
But when you can never be alone for any meaningful length of time. When you always need the help of others to do the simplest things. You are always going to be a burden, or at the very least feel like you are a burden, in some way or another.
Maybe the reason I want to be alone is because I don’t want to feel like a burden to anyone. And when I’m alone I can’t ask for help, so I can’t bother anyone, so for a little while I’m not a burden.
Not being disabled will always be inaccessible to me. And that means the life of those who aren’t disabled, the life of true freedom and independence, will always be as well.
So why call this post nighttime?
Well, if it wasn’t obvious that tends to be when I am alone, the most thanks to my messed up sleeping pattern. I’ve heard it said before that nighttime is the worst for your emotions, as this is when they are free to control you. And honestly right now I would have to agree.
Nighttime is when I am alone. Nighttime is when I realise being alone is inaccessible to me. Nighttime is when I cannot sleep.
And I’m not sure that will ever stop surprising me.
Tonight I let the carers in myself, as I do periodically. These were carers that hadn’t been before when I had been in on my own. and so they were very surprised.
They kept saying that it was good for my independence. But I honestly don’t like them judging my independence, and praising me for what they think is a positive step.
To me a big part of my independence is relying on others, it is being able to ask for the help that I need when I need it. As this is something I have always struggled with.
It’s important to remember that independence is different to everyone, and that despite what the word may mean, it doesn’t just mean doing things on your own.
Additionally it’s not helpful to praise disabled people for doing things that non disabled people do all the time, like opening their front door independently. This is how inspiration porn starts.
It honestly gets old that people are so impressed with me living my life. I didn’t ask for their input and I really wish they wouldn’t give it me. You would think that carers in particular would know better.
Just keep your comments about people living their lives to yourself.
I got told I needed to be more positive in my opinion of disability, when stating that I don’t think it’s a positive to wish someone could walk.
I understand that people have their own opinions and situations they’ve been through. But this post stated that everyone who can’t walk wants to walk.
Really this isn’t about being able to walk but it is about being disabled and wishing you weren’t. While we all wish we could change things sometimes, generally I don’t wish that I wasn’t disabled or that I could walk. I just wish I didn’t face the ablesim of society.
I was told today that believing this is negative in some way. When I said that suggesting all disabled people don’t want to be disabled is the same as suggesting someone shouldn’t want to be black because it’s easier not to be. This was apparently too much for the person I was talking to.
What bugs me here is that as a minority disabled people are not given the same respect to want to exist, even by other disabled people, than other minorities. To suggest that we should want that seems a step to far for some people.
So I’m going to answer this question in terms of what invention I feel has had the most important impact on me personally. Not necessarily the most important global or social invention of my time. Basically I’m not doing any research, I’m just answering the question based on my life.
If you looked at me now, you’d think this was the most logically answer. And while I am grateful for the invention of the wheelchair, and in my case particularly the electric wheelchair, there are in fact other more important inventions to me.
I don’t think I’d be answering this question properly if I didn’t consider the inventions that undoubtably saved my life when I was born. Like many with my condition I was born extremely prematurely and should’ve died. So a small nod to the inventions that are the reason I’m alive.
Then it’s important to remember the ones you’re more likely to see me in, my electric wheelchair. There’s my electric bed and air mattress that I need to sleep, as well as my electric blanket which has to be the best pain killer for me personally. My comfy chair which just gives me somewhere else to sit and my shower chair, which I hope by the title is self-explanatory. Then you’ve got to remember the hoist, that gets me from a, to b, to c and sometimes d.
But the ones that I feel are the most important thing to me are those like the mobile phone, the internet, the computer. Now I know this sounds very millennial of me, if I’m getting the terminology correct. And someone’s somewhere is going to judge me for my reliance on the internet. But just remember where you’re reading this blog.
The internet, social media and the technology that exists to use them on. Provides me access and inclusion to the world around me in a way my wheelchair cannot do in such an inaccessible world. Steps do not exist on the internet.
I know social media gets a bad reputation and I understand why. But I always say it’s the way people use technology, not the technology that it is bad. While this doesn’t apply to things like guns which don’t have a good use. It applies to things like knives which clearly do, and in the case of this post, social media.
Social media lets me be the me I wish I could be in the real world. It lets me meet new people near and far, and learn all about them. It lets me keep in touch with people, that would be even more difficult to do without social media due to my lack of mobility. The internet truly is a wonder. And phones can do so much, provide so much access beyond what I use them for.
Inventions truly are a wonder. They can often be used by people in ways the person who invented them likely never imaged. They are never to be underestimated.
I think it’s something that everyone talks about from time to time. Even when you know it’s never going to happen, it’s good to dream.
But I don’t even play the lottery, I don’t really have the money to waste, so I’m never going to win am I.
But let’s still give the question a go.
I used to say that I would by an accessible camper van. So I could live somewhere that was completely accessible to me, travel where I wanted, and see family. So that I could stay somewhere else without having to be uncomfortable. I even used to say that I would pay for carers to be on call 24/7 and follow me around in there own camper van.
And while this idea is nice, and maybe something I would do if I won a lot of money, I don’t think it’s where I would start if I won the lottery any more.
I would start with doing up the flat I live in now. Making it look nice and a little more lived in than it is.
I would then buy some more up to date tech. A good computer, a good phone things like that.
I would then stock up the house, get some better appliances than I currently have. I would make sure rent and bills are paid well in advance if possible so I wouldn’t need to worry about them.
Then a holiday, abroad. Somewhere hot maybe, or somewhere I’ve always wanted to go, Las Vagas, maybe. Or I’ve always wanted to go on a cruise, that would be fun. Or even just to say somewhere in a posh hotel.
I would also love to try a spa, get a new tattoo, get my hair done professionally. Those types of things. Maybe I could even get a jacuzzi in the garden with a hoist so I could use it.
Maybe then a car, and learn to drive.
What I find interesting about what I would do if I won the lottery, is I would just live a more accessible life. I would just like to explore the world a bit L, and live in little more comfort.
I don’t think that makes me different from many people. It’s just the money might be spent a little differently in order to active it.
It is likely to cost me a lot more to live a comfortably life, because of my disability. Life is more expensive when you’re disabled. Added to this is it is harder to earn money, and when it’s harder to earn money, you have less of it, which makes things altogether more expensive. And the inaccessibility of the world costs money to solve.
Life is just altogether more expensive when you’re disabled. People including the government somewhat recognise this, but no one who doesn’t live this life, truly understands the cost of disability.
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.
Actually doing what you want to is hard. Any person in the arts will tell you that.
As much as I have to write, as much as I love to express myself. a lot of the time what I want to say, never leaves my mind. The only person I can really be annoyed with about this is me.
As I write this, it is almost 5 am. And I’m actually using voice to text, it took me longer than it should’ve done not think of doing this, as cheating in someway.
Hello again, internalised ableism. I wish it was longer between our meetings.
There’s I really important post I want to share. But I’m annoyed with myself at not having the emotional energy to share it at 5am on a Saturday morning. How bad is that?
Does anyone remember watching cartoons on a Saturday morning? I think we need to bring that back.
Anyway, I can’t sleep because I fell asleep to early, so really, it’s my own fault. I knew it was a bad idea to go to sleep when I did, but sometimes fatigue just wins.
I had a world wind of a day yesterday, and I want to share some parts of it, well one particular part. But I can’t bring myself to write that post, for, well reasons. But obviously I can write because I’m writing this post, about wishing I could write that post.
Maybe it’s because the post I want to write feels so important, that I’m worried I’ll never be able to do myself justice with it. I just don’t know really.
But anyway, my favourite cartoon is Bob‘s Burgers. I wish I could explain why but I don’t really know. I love the way it’s written, the stories it tells, the inclusion, the escapism, the nonsense, all of it.
If you haven’t watched it, you definitely should. I know it’s shown randomly on some channels, but if you have Disney+, it’s mostly on there, apart from the season, which unfortunately I’m still still waiting to see.
I posted today in a fan group for the show, asking for similar shows to watch, as I’m almost always watching Bob burgers on repeat and I just wanted to see what else was out there. I got some lovely responses and some new shows to try. But if you have any recommendations, do let me know.
I should try to get some sleep, there is a possibility that I have a long day today, last-minute plans and all that. I don’t make them often as being disabled requires a lot of planning and last-minute plans are kind of the opposite of that. But I have options, so I’ll see how the day goes.
Either way, I have to be up in less than two hours.
My Inaccessible Life 