Archive for April 2014

It’s MY Blue   19 comments

Blue is the color of my joy. I feel emotions as colors and colors as emotion. Blue is comfort. It is energy without overwhelm. I studied color theory, but it failed to capture my autistic experience. For some things there are no words.

When I was a child I had a daydream. I kept it secret, because I was not supposed to want things, much less grand, beautiful things. I would pull out my 1972 World Book Encyclopedia and look for all the pictures of great landmarks such as the Empire State Building, the Pyramid of Giza, and the Sydney Opera House. Then I would imagine them bathed in vibrant blue light…

There is a progression to my relationship with me.
I was a child, and I hated myself. I was inherently broken yet morally obligated to prove otherwise. I was resented. I was a cross to bear. I was unredeemable. I wished for death, and I was not alone in that wish. Saintly grieving for a child lost was preferable to the day to day of me in all my sickly, time consuming, autistic glory.
But neither of us got our wish.
For all my brushes with death, my body would not die and my brain would not stop grasping for existential justification.

I became a parent, and unconditional love poured out of me. These vulnerable humans were so much their own selves, yet so much like me. They became my justification. Death, while still a possibility, ceased to be a viable choice. I mattered. I still wasn’t a real person, but I filled the needs of real people. The self loathing that previously propelled me forward subsided replaced by this new purpose.

A few years ago, my entire mindset shifted. I am human. I deserve to live, not because I am of use to someone, but because I am alive. I have inherent dignity. I need no justification. It’s disingenuous to say I love or even like myself, but I’m learning.

However, there is a price. The more I accept myself, the angrier I get. The more it hurts. The more I want back the things that were stolen from me like access to education, freedom of movement, control over my own body, and the right to joy. I wrest back what I can.

Which brings me to World Autism Awareness Day, an international effort spearheaded by Autism Speaks, and Light it up Blue. They made this thing that existed only in my mind, this most special childhood fantasy, real, then used it to kick me in the teeth. All over the world people join together in this colossal effort, ignited by a purpose:

To bring about a day where people like me cease to be born.
To spread a message of fear and panic that places me, and others like me, in real danger.

Autism Speaks, you are big and powerful. So far, your Awareness has managed to spread enough fear and misconceptions to make me a pariah in my own neighborhood. You have corrupted the mental refuge that sustained me through untold abuses with your World Autism Awareness Day. But you do not speak for me, and you can not steal my joy.

You can’t have my blue. It’s mine. You can use it for your puzzle pieces, sick little symbols of autism as an affliction, autism as a boys’ club, autism as a thief of humanity. It’s still not yours because you’re using it wrong.

It’s MY blue, so fuck you.
I will keep my joy.

Pale blue squishy chick stim toy with nubby feathers and orange claws.

non strobing squishy stim toy

iPad in blue padded case with handle.

My tablet

Blue folder underneath a blue mini stapler, blue handled scissors, and a blue and black Venom action figure.

office essentials

Blue noise canceling ear muffs on top of a closed laptop.

ear muffs

Blue mousepad on a black table. A black mouse sits atop the mousepad, and a red glasses case sits to the right.

mousepad

Sideways notebook with a list of Activities for Daily Living. Those notes are partially covered by a blue pen and an upside down checkbook.

ADL notes to self

Black stim toy with hundreds of little blue  'needles' conforming to the shape of  the hand of the woman holding the toy.

even more stim toys

Stuffed fabric elephant statue with cross hatched blue, black, and grey stripes. Elephant is standing on a carved wood elephant plant stand.

present from my boys for last month’s birthday

A 'cloud blue' storage shed with brown shingled roof. A rotary clothesline is in front and to the left of the shed.

freshly painted barn

out to lunch

out to lunch

Close up photo showing only the bright blue eyes eyes of young child. Blonde hair falls over part of the left eye.

extreme closeup grandchild selfie

 

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