What are the most important things needed to live a good life?
I understand that this can be a complex question, because it depends what you think a good life is, but I guess that’s the point.
Personally I would have to say one of the most important things needed to live a good life, whatever you believe that to be is Freedom. Freedom can look different to everyone. It can be the safety to live independently from others, or the ability to choose what you wear, how you look and where you go when you want.
Essentially I think Freedom is defined as living whatever life you want to live, within the bounds of not causing harm to others obviously.
Everything else I can think of that someone might need to live a good life, all stems from this idea of having the freedom to live the way they want to live.
A good life is a life that makes you happy, a life that doesn’t intentionally hurt others, life doing the things you enjoy.
I know this is a vague answer to the question but I don’t really want to be more specific, as I know that a good life can only really be defined by the person who is living it. The one thing I am clear about is that you do not live a good life if your life involves intentionally hurting others. This is never a good life, just keep to your own good life, and let others live theres.
By my own definitions here I don’t life a good life, I can’t do what I want when I want it because I need help to do it, make of that what you will.
When you need help for a lot of things in life, Freedom is conditional, so in my opinion it’s not really freedom.
I don’t live a bad life, by any stretch. I live the best life I can with the situation that my life has been presented to me. But I struggle sometimes to see it as a good life, by what I truly believe a good life to be.
But my chair and my legs had different ideas. My body just doesn’t want to do today and I’m struggling with whether that means I did or do or not.
I don’t know anymore.
I think because I’m so used to my body just being against me. That I forget how against me it is daily. Until I have the days where it’s just that extra bit against me. It makes me so sad, and I know it shouldn’t.
I should be used to this crap without letting it get to me.
I’m just tired of it. Sad I miss out because of it. I guess today I just don’t want to be disabled.
Language matters. And to some, the word disabled is the wrong word to use.
Some people prefer words like “differently abled” or “different ability”, but I’ll be honest these don’t sit right with me.
To me using the word disabled is simply factual. I am disabled, while there are some things I do differently, there are things I cannot do. And I don’t think this is something I should feel bad about or not acknowledge.
I feel like those who don’t use the word disabled want to change the language to make them feel better about their disability, which is of course their right to do. But I would rather own the language.
There’s nothing wrong with being disabled. It makes you who you are and you deserve to live in the world.
Being differently abled doesn’t make you not disabled, and that’s okay. Disabled is not a bad word, it just is. And I don’t like it when people think it is, it feels like they think I’m wrong for existing and being happy with that.
I don’t really know what else to say about this, without repeating myself. But remember language changes for us, we don’t need to change for language.
I didn’t learn that it was the good thing people tell you it is.
As I’ve grown I’ve learned everyone is different. But sometimes I still feel a kind of different I wish I wasn’t. I’m trying to work on that, but it’s not linear.
Sometimes when you’re disabled, living your life independently in an inaccessible world can be very dependent on specific pieces of technology.
Technology doesn’t know how valuable it is, and technology being technology it will eventually break. You will need a replacement eventually, that’s just life.
But just because you need a piece of technology doesn’t mean that you’ll be able to find the replacement you need for it. And what do you do when you can’t find the replacement that you need? Like anything, you adapt.
Adapting is something you have to do a lot in an inaccessible world, but that doesn’t make it easy. It can be very upsetting and difficult to do, especially when adapting involves changing a way you’ve had that works.
I don’t like to do it. But does anyone like change?
Needs must, I suppose. And so I’m trying to continue and adapt and change. To face the challenges life throws at me. But in all honesty it doesn’t get easier.
What are your morning rituals? What does the first hour of your day look like?
The carers get me changed and dressed and then I tend to go back to sleep in my wheelchair.
This depends on whether I have to do things in the day, mind you. If I have to do things that involve going out, and have a say in when they get done, I try to get them done as early in the day as possible. In this case I wouldn’t go straight back to sleep. I would wait until I’ve done what I needed to do.
If I don’t have a say in the times things need to be done, I would probably sleep until the time that I need to do whatever it was.
If I get a say in it, which because I need help to do if, I don’t always. I like to get the dogs walked as early as possible. In all honesty this is just to get it over and done with so that I can go back to sleep.
I think the most unique thing about humans is the way we experience emotions.
The fact that different things make us all angry, sad, scared, loved. While you may understand someone’s emotions it can be difficult to understand what triggers them, and impossible to understand how they feel them. And I honestly find that extremely fascinating.
I firmly believe that nobody’s experience is exactly the same where emotions are concerned. But if you can try to understand someone’s emotions in a situation you may be able to understand more about them and who they are as a person.
I feel like emotions, the emotions of others, are a big part of how I understand the world around me. I think this comes down to my disability, and the fact that I cannot understand the world completely physically. No matter how I hard I try, physically there will always be things that I miss due to my disability. But emotionally I am able to have a more complete understanding of the world around me. Man made ablesim doesn’t exist in the emotional world.
But just because I understand the world around me better through emotions, doesn’t mean that my emotions are easier to deal with.
At the minute I am dealing with anxiety over doing something that I know is important but scares me because it involves a phone call. I hate phone calls. No matter how important I know they aren’t I don’t want to make them. Annoyingly sometimes I get the confidence to make the necessary phone calls, but of course this never lines up to when I’m actually able to do that. And when I am able to do it, my anxiety acts up again.
What I can be sure of is my emotions don’t like me. But maybe that’s part of what makes me a unique person.
It may surprise you to learn, or it may not depending on your life experiences, that hospitals can be very inaccessible places to be.
I am fortunate enough to not have to spend too much time in hospitals, but I do have one fairly regular appointment. Today I’m at that appointment, though at a different hospital. And I have to be honest, that the same appointment being at a different hospital has really thrown me.
It feels as if the routine of my regular appointment has been disturbed. The people assisting me, don’t know me, and to be honest with you it makes the experience more difficult.
I’m not talking about the medical side of it all. I’m talking about the other bits required because of my disability. The parts of my life that follow me around and always seem to get in the way.
The biggest part is hoisting. Something staff generally don’t seem to be used to. My regular hospital got used to it because of me.
Getting me on the bed is such an experience, that it is almost worse than the procedure sometimes. These are complete strangers I’m trusting to take me out of my chair, in an unfamiliar environment, and I have no choice in it.
I should be used to the fear, and the anxiety. Getting out of my chair. The uncomfortable nature of it all. But I’m not sure I ever will be.
Being disabled isn’t accommodated well in hospitals. They expect you to be ill, but not to have ongoing problems they can’t solve. Disability seems a step to far for them.
All of this and its not even the procedure itself I’m worried about. In fact that’s probably the easiest part.
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.
My Inaccessible Life 