Sharing my life and areas of inaccessibility, as a full-time electric wheelchair user.
There were so many obstructions I jsd to deal with on one road today that it was easier for me just to video and explain the situation. Have a look if you like.
https://vm.tiktok.com/ZGJHfU86o/
I had to add this as a link because it would not let me add the full video.
I’m aware my carers can be late in the evening due to previous calls. But when they don’t let me know it delays when I eat my tea, as I explain in the above clip.
Occasionally, I then end up eating my food too quickly for me, as I did tonight. Even though it took me 30mins to eat a small meal, I feel as if I ate it to quickly and I am now dealing with the side effects of this.
Almost everything I do is reliant on other people. All I’m asking for is them to understand and respect that. And at least tell me when they’re going to be late.
I’ve heard them like to other clients while in my house. They seem not to be able to understand that honestly is better than lying and it’s honestly frustrating.
This evening they used the excuse that I wouldn’t answer the phone, while this is occasionally true, that’s not an excuse for them not ringing or contacting me in any way.
They want understanding when they don’t really want to give me any.
My life is inaccessibile to me when people lie to me, and don’t tell me what is going on. What’s a job to them is literally my life.
https://music.youtube.com/watch?v=Nl2GwLtMX7s&feature=share
As you may well have realised by now some of these posts have Tiktok videos attached. This is because I occasionally do a Tiktok that inspires me to write a post. So I wanted to talk about my Tiktok username.
My Tiktok username is Spazticallydoingthings in reference to my disability Spastic Diplegic Cerebral Pasly.
Now someone pulled me up the other day on this username and particularly the use of the word Spaz. Particularly in reference to the way this word has in the past been used as an insult towards disabled people, not least those with Cerebral Pasly.
I’m very aware of this. I have been called a spaz as an insult by many people including family.
Side note: The literally only reason I spell Spaz with a Z is because as a child I thought it looked cool.
So instead of letting this word upset and aggravate me I often use it to describe both myself and things my disability effects in my life. I will either use this in a neutral or positive way, I try very hard not to use this in a negative way. And I NEVER use this word to describe any other disabled person. I am very clear about that. It is a choice I have made about myself and the way to describe myself, not other people.
But it is my Tiktok username, and as I have started sharing my Tiktoks on other social media platforms, people have a face and a name to put to this use of the word. I am therefore not surprised that someone has objected to my use of it.
But honestly none of this is going to stop me using the word for myself. I don’t think it’s a bad word. It is simply a word that’s been used in a bad way.
The objection I received to my use of the word said that able bodied people may see me use that word and think that they should use that word for other disabled people. This is not something I’m responsible for.
I am not responsible for the generalisations made of able people. I am not responsible for the fact that able people think once they’ve met one disabled person, they’ve met them all. Especially when I go out of my way to remind them of the contrary. Check my Tiktok bio and you’ll see what I mean.
Able people need to own there actions towards disabled people. Other disabled people and the way they choose to live there lives are clearly not responsible. We should not be made to feel like we carry the weight of the entire community simply by just existing.
My Inaccessible Life 