Experience

Inclusion

There is a weird thing about disability that people are oblivious to. It’s always feeling like I’m undervalued, misunderstood and the weirdest thing is being excluded simply by not actively including me, or someone like me. It is not always about me.

But I’m aware I push in often to remind people of my very existence, not everyone feels confident to speak up or make their presence known or heard.

Then, there’s the other times I commentate when sharing an experience with others on how I’ve been treated. They don’t even need to ask, I tell them, “It’s what I want to say, but knew better?”

But there are even people, like family I don’t speak my mind to because I presume, based on previous experience they will be offended, it will go terribly, so I bury the pain deeper.

lifeonehanded1

Life One Handed Part 1

On a very rare occasion a person carer will have her hands full and doing something to help me with ‘whatever’ and they will say to me “I had the experience of what it must be for you one handed”.

experienceonehanded

Sometimes, it’s not even a comment but a shared look and I will give them a murmur of aging with them and respond “Sucks doesn’t it”

Sucks Doesn't it

Because while they have that brief shared experience with me, I live it every single day. There is no ‘freeing up a hand, there is no break or holiday’

livingwithit

It’s all the friggin time. Ad nauseum.

adnauseum

I guess I should point out it is even more frustrating watching someone struggle to do something with two hands, that I can do very easily with on one hand.

Struggling with 2 hands

I had a young carer once who I gave the task to go hang out some bath mats on the line and on a clothes rack. I gave her the small clothes rack and she commented how much she hated them.

clothesrack

I waited a moment to witness her hold one rail in a hand and fling it around a bit. I don’t know what she was expecting to happen, but she seemed to be having a very hard time. Like she was having a fit. No, really!

I walked away because I couldn’t just stand and watch. I also had to let her wear herself out. Because, I also needed to use “words” to describe to her how to do it.

nowords1

In the end she got there, but it seriously would have been easier had she given it back to me to do. I’m not saying it was the nail in the coffin for that carer to not return to me, it wasn’t, but it didn’t help.

nailinthecoffin