The author sits in a fairytale garden drinking champagne and contemplating, while her memoir (If You Really Love Me, Throw Me Off the Mountain) sits across in a chair, adorned with roses and carnations, and exists.
"We start to write a book in order to become the person who finishes the book.” David Mura
I distinctly remember, when I was eight or nine I heard myself think, “I am *actually* in a wheelchair.”
I had always used one. I was born disabled. Nothing had changed. It was a realization of the obvious, which I think, despite me lacking a word for it, you’ll understand —we come awake to ourselves and to things we already knew all the time. Unprompted, rolling through my house, it occured to me that I was inside my body and my body was inside a wheelchair and this wasn’t a dream.
I think it’s important to know how much I lived in fantasy at that age. I weathered the chaos of my childhood (a separate chaos from being disabled), inside my own worlds.
In my fantasies, I could give myself completely to adventure. In the most dire of circumstances, call on my noble, courageous instincts and triumph. Every time, I prevailed. I didn’t relate to the contours of reality where disabled people prevailed over nothing so I reshaped them with my own meanings and layers. Like decoupage. And truly, just as messy.
I didn’t wake up from a fantasy of NOT being disabled. It was the opposite. Oh, I thought, this thing I have been dreaming is also true. I had taken my disability with me into my fantasies and it was strange after that, to see my ‘real’ self out in the mundane world.
There is a magical element to being a disabled child. I sometimes wonder if I learned to make myself a fantasy world from the people who made me a fantasy child. Pure and perfect, sacred-angel-child-saint who could heal you and be healed by you in a circle jerk of miracles. I was suspended, by way of no expectations for a tangible future, in this elevated, precious state. And treated with the appropriately affected tenderness. People would cry just to see me. What was this power? Could I use this for myself? Yes. I could. And I did. The magical parts of being a disabled child fuck you up exactly as bad as the tragic parts of the descrimintation ahead of you, because they are actually the same parts. It’s just that, as a child, everyone conspires to dress up the tragic parts as if your life is christmas and you will be dead soon. But then you don’t die. You go through puberty instead. And the only person left still trying to dress up life, if you’re the sort, is yourself. And I am the sort.
Which is why I think I could have a moment, in the house where the carpets were pink and I was entering the sunny living room with the window that looked down over the entire complex because the accessible unit was, somehow, perched at the top of a very steep hill. And at the threshold between hallway and main room, I suddenly realized that the wheelchair I dreamed, was a real wheelchair and I was in it. It wasn’t just one of the many lives I had conjured, it was the actual one. Then I tucked my head back inside the shell of my wonderworld and was fantasy disabled until well into adulthood.
As an adult, I had to —again— discover the disability I was born with. No, I knew it was there, what I had to learn was how to acknowledge it. No. What I had to do was like an extra puberty that can happen at any point in a person’s life when they are disabled. I had to pass through the perceptions about disability created and reinforced by society - perceptions that I never related to or identified with but that I would forever be affected by and, weirdly, responsible for. I had woken up to myself, now I had to wake up to the world by learning what form my act of responsibility would take.
In my case, I let the form choose me. Writing chose me. Well, it chose my imagination with regard for its troubled origins. Writing, despite its stuffy reputation, loves to play.
Disability was peeking out from the edges of arts and culture. Over there in Academia. And oh, then came social media. And we could just do it all for ourselves and we were ripe. Dripping from the orchard trees with no one to collect us. So we dropped to the ground and fed the earth and fed the squirrels, which is the same as feeding ourselves.
Back then there was no posting about our sex lives and how our relationships work and how good we look in our outfits or how we do our jobs or how enraged we are by our place in the scheme. Now we are models and actors and sexicons and professionals and mothers and creators of our own schemes. Though we always were, but we woke up to each other, now we can cheer each other on. We made that happen out of nothing but ourselves and a few apps.
It was like when you pass your fingernail across a roll of packing tape to find the edge. And then have to scratch at it very carefully to get enough purchase at the edge to peel it away.
Pulling the tape is a metaphor for writing. Writing about being disabled. Well, no. It’s a metaphor for writing, I write about myself, and I am disabled, so I have to learn how to write about disability in order to write well. And by learn, often that means invent. To answer the evolving question: what does this mean to me? What does this feel like on my insides, not from the outside in. Expanding the conceptual vocabulary beyond horror, pity, inspiring, intolerable suffering, dead.
I fold the edge of the tape roll in on itself so it makes a tab. Easier for the next person to peel off a piece.