You know my answer to this question. Five years ago I visited a bookstore and asked this simple question: where are your books about disability? I was told they didn't exist.
I wanted to revisit the experience today. Surely things have changed in five years.
I visited a major bookstore today (big chain) and asked about disability books. First, a big awkward moment. Store clerk: What do you mean?
Me: Well, books about living with health challenges, disabilities, how to manage and stuff . . . (stammering begins as I notice his confused look)
Aside: now I know books about disability issues exist- I have one here at home called Living Well with a Hidden Disability. But a nervous freeze catches me, like asking about disability topics is distasteful. Wrong. Making him uncomfortable.
Me: Like the book by Michael J. Fox, Always Looking Up, like that, the challenges of living with disability. It was the first title I thought about. He had to know that book.
Him: Oh, you mean Parkinson's?
Me: Not really . . .
Him: Parkinson's is right over here. You mean a specific disease, right?
He had no idea what I meant. So I thought, the general area, sure. I'd find my way. I landed in the health section. Miracle Diets, Cure Your Migraines, Parkinson's. I let the clerk walk away. Thanks. Ten books on Parkinson's, but no Michael J. Fox books. Those must have been . . . somewhere else.
We are the ghosts. Our lives are shadow-lives that no one wants to accept, really. Mainstream society can see the diseases and the treatments and the diet-cures, but cannot see the lifestyle.
I could find a dozen books about decorating cupcakes or traveling with my dog. But living with a disability?
Well, let's not think about that.
Yet millions of us are living with disabilities. Every single day. Our lives matter.
Every single day, more people are diagnosed with lifelong challenges. And they go to the bookstore. To be directed towards an irrelevant aisle.
I want our own aisle in the bookstores. We deserve that. A collection of books to support, inspire, and educate. My new dream :)