On Friday, I rediscovered a secret world.
The world of the disabled.
I used to visit this world as a child. I am not disabled but my older sister, Lynley, was. With her as my guide, growing up by her side, we traveled back and forth between the abled and disabled worlds together, and I learned the differences, not only between the two places, but between Lynley and I.
In my world, when I walked through a mall, other people’s interest in me ranged from polite smiles, to casual glances, to disinterest.
In my sister’s world, the mall was not a place to walk and shop, it was a circus and she was the freak show. In the spotlight as soon as she stepped inside, she was subject to every single person’s stare. Men, women, children – they all stared. They stared long and hard. Far longer than they should. They followed us with their eyes, weighed us down with their scrutiny, and turned us into glass, transparent and ready to break.
Everywhere we went, I saw two worlds: hers and mine. Naturally, I thought everyone could see it – the dichotomy, the different experiences, the difficulties of the disenfranchised.
But not everyone has access to these secret worlds. Even I was only a visitor.
When Lynley died, she took that world with her. Like the lost city of Atlantis, it sank down into my past and I let it lie under the deep sea of my grief.
Now, many, many years later, I’ve written a book, Grace and the Guardian, with a disabled protagonist. It’s not a book about a disabled person, it’s a story whose heroine just happens to be disabled. I make the distinction because that’s how I always saw my sister – as a person, first; her disability always came second. I could never understand why others couldn’t see her that way, too.
But Grace and the Guardian is also about secret worlds – the world of the abled and disabled, the living and the dead, the evil and the good – and what happens when these volatile worlds combine.
On Friday, I sat in Starbucks and no one stared at me. I never thought I’d forget what it was like to walk with a disabled person – not even in her shoes, just walking beside her – but I did forget. It’s one thing to think about and even sympathize about. It’s an entirely different thing to experience.
I wrote about Lynley’s world to try and introduce others to it, and perhaps to remind myself of it, but mostly I wrote about it because I miss my sister’s world, and I miss Lynley most of all.
KIMBERLY SAVAGE 