Sleep evades me. I’m tired. I’m cold. I’m hungry. I’m weak. I’m feeble. I’m so very wary. I’m sick. I’m currently flopped on the floor, curled up with my security monkey, Zeke, and one of my fuzzy blankets. The only sounds are the gentle wind blowing outside as we gear up for a winter storm and my cat munching her foot. The third sound is the rhythmic tap of my fingers dancing across the keyboard. Tap. Dance. Leap. It’s become old hat at this point: it’s 5:40 am and I’m wide awake, yet completely exhausted.
“You’re wearing yourself out.”
“Why are you still doing this?”
“Why won’t you give up?”
“Why do you care so much?”
Questions people ask. Questions people don’t ask, but I can see it on their faces. In their eyes. I can hear their concern laced through their words. Why are you an activist when your own health is so fragile? How can you call yourself an activist when you don’t make phone calls, you don’t go to the places, and you don’t do the things? You’re lazy. You’re not enough. You’re just a slacker – you aren’t making real change.
I don’t believe any of that. I don’t think any of that is true.
Nights like this are why I’m an activist. As I lay on my floor, shivering yet burning up. Unable to move without intense pain, yet unable to sit still. As Compazine and Zanaflex runs through my veins. As I’m alone and in need of medical help…that doesn’t exist. For if I go to the ER, I will be treated like I am a drug addict. An attention seeker. That it’s all in my head. And nothing productive will happen.
But I am one of the lucky ones. I have a diagnosis. I have a laundry list of them. Some people don’t. And that’s why I’m an activist. That’s why I write. So people can think “Hey, me too!” and know they aren’t alone. So people can think “hey, there’s a name for the thing!” and roll along with it. I’m not an activist because I want to be – I’m an activist because I have to be.
I’m an activist because there are still nights when I’m on the floor, unable to get relief from my pain. I’m an activist because I’m autistic and people feel the need to take away my rights. I’m an activist because people think I’m helpless just by looking at my list of disorders and not getting to know the person I am – kind, compassionate, loyal, cynical, sarcastic, and more all rolled up into one feisty person. I’m an activist because it quite literally is my only option – for when I am silent that’s when they are winning. When I speak, that’s when I have power.
I’m an activist despite my disabilities. I have a voice even when I’m silent. Even though I’m straddling two worlds – physical and online – I’m an activist. Even though my activist life is solely online due to my phone phobia, social and sensory problems, and physical health – I am am activist. Even though it’s limited to flash blogs, tweets, blogs, submitting my work online, and Facebook – I am an activist.
I am an activist because I work for change. Perhaps it’s merely opening a new perspective. Perhaps it is me helping someone put into words something they never could before. Perhaps it is helping someone realize the way they are acting is dangerous and ableist. Perhaps it is nothing – but I have made peace with that.
Being an activist doesn’t mean you do all the things. It means you strive for the changes. It means you do everything in your power. We all cannot do everything, we all cannot be everywhere.
But we all have the power to do everything within our own abilities, and that is what I am doing.