Wednesday, November 13, 2013

This Is the Week Autism Speaks Meets Its Downfall

"If three million children in America one day went missing – what would we as a country do?"

What would we do if three million people in the United States were being told that they are missing?

Missing from where, I'm not sure.  Missing implies that there is a place that they are supposed to be.  Missing implies that something is lost.  The remote control can go missing.  The umbrella you left in a taxi can go missing.  But people who are living and thriving and loved, people who have their own agency, people who are exactly where they want to be - they can't go missing.

"And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?
And, if they do – who cares for these children?
There is no national plan to build a city for 500-thousand people."

Somehow, we have fallen into a time warp and have been whisked away, back to the days where leprosy was feared above all else, and leper colonies were set up on remote islands.

Except it's not leprosy anymore.  It's autism.

Scared yet?

"...we’ve for the most part lost touch with three million American children..."

No, Autism Speaks.  NO.  YOU have lost touch with millions of American children - AND adults.  I'm really not convinced that you were ever in touch with them in the first place.  You have repeatedly failed to listen to what THEY want, what they need, as opposed to what you think they need.  The images portrayed in your media - of stolen children, burdened by a grave illness - is not their reality.  It's not MY reality, as a friend to many Autistics.  Your words are not just insulting.  They're not just untrue.  They're terrifying.  And if there is someone out there reading this who is not scared of Autism Speaks, I suggest you read...and reconsider.

These families are not living.
Oh really?  Because I see living everywhere that I look.  Spinning, stimming, dancing, singing, flapping - that's all living, despite your statements to the contrary.  Autistic people are living.  Family members of autistic people are living. And they are all living with the knowledge that diversity is rich and beautiful.  That autism may present some struggles but the far more pressing problem is the attitude that an autistic life is not a life.  An attitude that you have perpetuated again, and again, and again.

Autism Speaks, you have made a grave error in judgment.  Your words intended to invoke terror have backfired.  Because we're terrified, all right.  But not of autism - of you.  You have the money and the power to shape the views of every American and you are using it to advocate segregation and genocide.

But your power is waning.  People are breaking out of the hypnotic haze you have put them in.  Self advocates and parents who were once bitter enemies are united now, in calling for your destruction.  John Elder Robison, the only Autistic to ever have some sort of role in your organization, has resigned.  You now cannot claim to have any Autistic representation in your organization at all.  The world has shifted on its axis as more and more people rally against you.

This week is the week America will fully wake up to the autism crisis.
This is the week America will fully wake up to the Autism Speaks crisis.  Guess what?  They already have.  This is the week you meet your downfall and I couldn't be happier.  The times, they are a'changin - and you better get with the program or else you'll be left behind. 

6 comments:

  1. I work with little kids who have Autism now. All I see is that they are some of the most lively and loving people I know. They are not missing. Their brains just tell them different information and if people took the time to meet them half way they would see what awesome people they are. Go Cara!

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  2. All communication takes two parties. One party must be able to generate communication signals and the other party must be able to decode those communication signals into mental concepts.

    Communication failure can never be isolated to one side of the communication.

    http://daedalus2u.blogspot.com/2008/10/theory-of-mind-vs-theory-of-reality.html

    The communication failure that Autism Speaks observes is self-inflicted. Of course if you refuse to listen you will be unable to hear and unable to understand.

    ReplyDelete
  3. All communication takes two parties. One party must be able to generate communication signals and the other party must be able to decode those communication signals into mental concepts.

    Communication failure can never be isolated to one side of the communication.

    http://daedalus2u.blogspot.com/2008/10/theory-of-mind-vs-theory-of-reality.html

    The communication failure that Autism Speaks observes is self-inflicted. Of course if you refuse to listen you will be unable to hear and unable to understand.

    ReplyDelete
  4. THANK YOU!

    I am tired of the people at Autism Speaks pretending to speak for me - when they don't try to claim that I am not autistic because I am capable of communicating IN WRITING, with a thousand miles of electronic armor between me and all the balding monkeys who contribute to the pain of dealing with a species that does not understand, and DOES NOT WANT TO UNDERSTAND anyone who is not neurotypical.

    Autism Speaks, and those like them, can't seem to decide whether I have leprosy, or I don't exist. BOTH positions make them an enemy, not a friend.

    ReplyDelete