It’s MY Blue   15 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

 

15 responses to “It’s MY Blue

Subscribe to comments with RSS.

  1. Damn this is good. Blue is yours—you look good drenched in joy <3

  2. Oh my gosh what a kick in the teeth indeed.

    I love you. And like you. So fuck them indeed.

  3. Many many hugs to you. You sure as heck do matter, and your words send out ripples of change.

  4. I am a parent of a son with Aspergers. In my involvement with autism speaks I have never felt the negative things that you speak about. Maybe you have come across people that made you feel that way but the office I deal with they are very caring individuals. I celebrate my son and his Aspergers and you better believe I spread awareness whenever I can. Especially at their school and I believe with my whole heart that this helps his peers and the staff understand him and how his minds works. To me as a parent that’s my job. I would never want to change my son but you better believe as long as I am alive I will do everything in my power to help him with and struggle in life!! And my house is lit up blue and I am proud of my family:)!

    • First, let me apologize for the delayed response. I urge you to go back and read the links in the above post, and other posts on this blog regarding Autism Speaks, particularly http://www.boycottautismspeaks.com/.
      I’m certain you’ve dealt with people in your local chapter who have treated you with nothing but kindness and respect. This does not negate the goals and philosophy of the organization at large, and those goals and philosophy endanger autistics.

  5. World Autism Awareness Day can be more than Autism Speaks, lets not let them have it all. I work with an autism organization whose WAAD message is “When we raise the flag we show our respect for individuals with Autism Spectrum Disorder across their lifespan and show our committment to help them realize their potential.”

  6. Thank you. I had no diagnosis, but what you described as a child was my existence. Stupid, burden, ugly, clumsy, useless, incapable, an unredeemable cross to bear. Undisguised dyslexic as well. The regretful adoption and shame of the family. The only one to suddenly get stubborn and gain a tertiary education. The only one who home schooled and dared to do differently. The only one to work out and fix her children’s’ health when doctors didn’t. The only one aiming to go into neuropsychology. The only one with a happy marriage and kids not in prison. Thank you. Not bitter but scars are still healing. And articles like yours remind me to keep my eyes off my navel and keep going. Bless you.

    • Of all the comments I got behind on when I was ill, this is the one I truly regret having delayed.
      You are full of love. May I send hugs, and perhaps virtual cookies. You carry on doing what you know is right and stay proud.

  7. Pingback: the color blue | a diary of a mom

  8. OMG, this makes me sad and angry. some autism parents are mama and papa bears, and some are resentful and abusive. My parents had a problem accepting me, too. They put pressure on me to be like everyone else. They didnt understand you cant force someone to make friends or want to be around people. However they were never abusive, although they berated me for my autistic traits.

    I cant imagine going through the things you mentioned. no freedome of movement and control over one’s body sound like torture to me. no one has the right to do this to a kid. i dont care if it’s his/her own. kids arent their parents’ property to do with as they please.

    but you have risen to the challenge, and now you have your own family. so happy for you.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 124 other followers

%d bloggers like this: