In a cabin in Tennessee, I rewrote my story. I rewrote the story I’ve been told about myself dozens of times; the story where I die tragically, the story where I kill, the story where I have no future, the story where I am not and cannot be the hero.
Madcap Retreats hosted their Writing Cross Culturally workshop last weekend in the Smoky Mountains. It was a four-day whirlwind of lectures and panels and it not only changed my writing, it changed my life. Justina Ireland was kind enough to critique the first six pages of my novel-in-progress. She gave me tips that will revolutionize the book, my storytelling techniques, and blow my work out of the new-writer waters.
Close to the end of our time, I said to her, “I can’t be the hero of my stories.”
She looked at me with such pity. “But you can, though,” she said.”
“No, you don’t understand,” I said, petting Stella. “I can’t.”
“I think you can,” she said. “I know you can.”
The next day, I turned that interaction over and over in my head. I thought about the TED Talk we watched by Chimamanda Adichie about the dangers of a single story. I thought about microagressions and power vs culture in fiction. I thought about Foucault and his Panopticon. I thought about reclaiming words like “crazy” and “disabled,” the way Julie Murphy has reclaimed the word “fat.” I thought about social work concepts like “reframing,” and how could I use that to change my story.
Upon being diagnosed, I have paid very close attention to representations of myself in fiction/film/the news. People like me rarely survive, and we’re often cast as the villain. The only occasion I can think of where people like me survive is in A Beautiful Mind, and in that movie John Nash doesn’t take his medication — not an option for me. (I haven’t read Erica L. Satifka’s book Stay Crazy yet, but it’s on my To-Read list. I don’t want to discount that her book might have a different ending.)
That doesn’t even get into my disability: what I can’t do, what I’m unable to experience. During the five days in the cabin in the mountains, I spent a lot of time in my room, alone with Stella. I couldn’t socialize with the 70 people in the cabin. So, instead I spent time laying on the bed, soothed by the white noise of all the conversations bleeding through the walls. Stella stayed by my side, sleeping soundly.
If I hadn’t done this, I wouldn’t have been able to attend meals, panels, lectures. I couldn’t have made my 5:15am ride to the airport on Monday. Thing is, nobody at the retreat said a thing to me about it, nobody pitied me, until I got home and told my family. It was just something I needed to do, and I did it. If I had tried to socialize, I would have had to leave early, and might have missed out on a life-altering experience.
As a disabled person, I know my limitations, and I know what I have to do to get to the next day. This isn’t something to pity, this isn’t something to mourn. The story of the disabled person is one of constant adaptability, of constant evolution. As the world isn’t built for us, we must always change and morph into ways to fit ourselves into our world’s Western cognitive and physical narrative.
So here’s the thing:
If an able-bodied person spent half a day in my body, in my head, they couldn’t get done what I get done in that time. I’m willing to bet they’d have problems just getting out of bed, which is something I have to convince myself to do every day, cause I’m besieged every morning by reasons my life is terrible and reasons to stay in bed.
But my life isn’t terrible!
There is no moral failing in being disabled. There is nothing inherently evil about being mentally ill. There’s this immense pressure in Western Culture to conform. To “Be Like Ike” as it were. So we believe that any deviation from that Western Cultural norm is capital W-Wrong. We believe ourselves to be Wrong, that there must be something so bad about us for our bodies and our minds to have failed us. I know I’ve asked so many times, “What’s wrong with me? What did I do to deserve this?”
My brain chemistry is not like other people’s. I have to take medication so that I can function daily, so that I can get done what I want to get done. I have to walk and I have a service dog for me, for my independence, so that I can be the best me I can be. Not so that I can be a better person. I am a good person, I know that. I don’t have to prove that to anyone, I just have to continue to be me, to be good.
As disabled people, we are not moral failures. We are not bad Americans. We are not bad people.
I am trying to reframe how I talk about myself. Because I know that my husband, while a wonderful and amazing man, couldn’t make it through two days in my head. That makes me some kind of superhero for getting done what I’ve done in the past two and a half years. Hell, for even getting this blog post done. Hell, for even waking up and getting dressed this morning.
So I’m like a mutant. Not like a Creature From The Black Lagoon type mutant. I’m talking X-Men type deal. This isn’t to say I’m having delusions that I have superhuman powers that I can stop time like Quicksilver or that I have super fast healing powers like Wolverine or something. It’s just that I can do more every day than your average able-bodied white dude. That makes me pretty special. That makes me like, Xavier’s School for Gifted Youngsters special.
Does anyone know if they accept 39 year olds?