#SongoftheDay Fragile (Stevie Wonder and Sting)
When we were watching the Olympics, a commercial kept playing where a Paralympic athlete said something like: I'm disabled, but I'm not fragile.
Every time we saw that, I would say to my partner, "I'm disabled and I AM fragile."
For someone who always prided themself on being strong, it's been a huge shift. I can't do things I used to do, but I'm constantly forgetting how weak I am now. I try to do things, and I fail spectacularly. Which is often embarrassing, because I offer to help old ladies at the grocery store when I see them struggling to pick something up, and then I can't pick it up either.
Every time we saw that, I would say to my partner, "I'm disabled and I AM fragile."
For someone who always prided themself on being strong, it's been a huge shift. I can't do things I used to do, but I'm constantly forgetting how weak I am now. I try to do things, and I fail spectacularly. Which is often embarrassing, because I offer to help old ladies at the grocery store when I see them struggling to pick something up, and then I can't pick it up either.
(Oh, I've got a good story about that, but I'll save it for another day.)
Here's an example of how weak I am now: I had to ask my partner to refill my water bottle because I couldn't lift the Brita filter. This is pretty standard.
Before I became disabled, I wrote characters with physical disabilities as fierce. And in one way I'm glad I did. But that certainly isn't my experience of living with a disability. I am the opposite of fierce, especially because I experience cognitive impairments in addition to pain and weakness and my other physical symptoms. I stare a lot. I often cannot hold up my head. Sometimes I can't close my mouth, and I'm aware that I'm drooling, but I can't do anything about it, and then I start to cry.
Here's an example of how weak I am now: I had to ask my partner to refill my water bottle because I couldn't lift the Brita filter. This is pretty standard.
Before I became disabled, I wrote characters with physical disabilities as fierce. And in one way I'm glad I did. But that certainly isn't my experience of living with a disability. I am the opposite of fierce, especially because I experience cognitive impairments in addition to pain and weakness and my other physical symptoms. I stare a lot. I often cannot hold up my head. Sometimes I can't close my mouth, and I'm aware that I'm drooling, but I can't do anything about it, and then I start to cry.
I am so far from fierce. I am fragile as fuck.
I have a friend and fellow writer who has a degenerative disease and is a lifelong wheelchair user. He was best known for his series of thrillers featuring a James Bond kind of hero. A mutual friend asked him why he didn't create a series featuring a kick-ass hero who is a wheelchair user. This is not a direct quote, but his response was something along the lines of: I can't translate my experience of disability into a kick-ass character I would believe.
My own experience of disability is so depressing it makes me cry. Often. And it's boring. And the experiences I've shared with you of being pushed around and insulted and not helped when I needed help really jab at my soul.
I have a friend and fellow writer who has a degenerative disease and is a lifelong wheelchair user. He was best known for his series of thrillers featuring a James Bond kind of hero. A mutual friend asked him why he didn't create a series featuring a kick-ass hero who is a wheelchair user. This is not a direct quote, but his response was something along the lines of: I can't translate my experience of disability into a kick-ass character I would believe.
My own experience of disability is so depressing it makes me cry. Often. And it's boring. And the experiences I've shared with you of being pushed around and insulted and not helped when I needed help really jab at my soul.
I can't imagine being anyone's hero.
But I'm glad there are (lots of) disabled people who are someone's hero. Because they are fierce. And not fragile.
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Giselle
