November 1, 2008

Dear “Curing”, “Fighting”, “Treating”, and “Rescuing”

What you’ll discover about me, as time goes on, is I’m learning how to “let go”.  What this means is I haven’t achieved that goal as of this writing.

I say this because this post is addressed to those of you who are bent on “curing”, “treating”, “fighting”, and “rescuing” autism.

I say this because I know that my son is beautiful and wonderful and fine… just the way he is.

I’d like to introduce you to Amanda Baggs.   She is autistic.  She is “non-verbal”.  She is intelligent.  Very intelligent!

Are you listening?

Now, I’m sure her name is familiar to you as you probably use her as an example of “what will happen to our children if we don’t ‘cure‘, ‘fight‘, ‘treat‘, ‘rescue‘ them from autism”.

Harsh words, I know.  But the use of ‘cure‘, ‘fight‘, ‘treat‘, and ‘rescue‘, give rise to the dehumanization and devaluing of lives.

Lives of people who matter.

Lives of people who have a “voice” and want to be heard.

Lives of people far more evolved… than you.

Amanda has a blog.  Yes… she blogs.  She also video blogs. {I’m sure you’re shocked; you can close your mouth now.}

Amand’s blog is titled, “Ballastexistenz“.

The following is an explanation of the title, in her own words.

The reason that I have chosen one of the offensive terms used in the German eugenics movement against disabled people — which, for reference, predated Nazism, was heavily influenced by American ideas, and survived after World War II — is to force people to look at the sentiments that drove that movement, that came before it, and that are still prevalent worldwide today.

Ballastexistenz means about what it looks like: Ballast-existence, ballast-life. Some of the other terms that were applied to disabled people at the same time included leeren Menschenhülsen (empty human-shaped shells/husks), and lebensunwertes Leben (lives unworthy of life).

In using these terms, I do not for one moment forget the gravity of them. The ideas that gave rise to that terms have existed a long time and continue to exist. These ideas threaten the lives and well-being of disabled people everywhere. Autistic people are frequently described in these hateful ways, as empty shells without souls, burdens on our families and society, contributing nothing, ballast that merely weighs everyone else down.

I put this name on my blog in witness to what can happen, has happened, and is happening when real human beings are thought of this way. I am a non-speaking physically disabled and autistic woman who’s lived in institutions, whose income comes from a disability check, and whose services are funded by the state. I am and have been exactly the sort of person who is meant when these awful concepts are used. I and the people I know and love are people, not burdens and ballast and wastes of space and money. All these ideas do is dehumanize us, and in contrasting these words with my real life I hope to show how wrong they are when applied to anyone.

I did mention she was intelligent, right?

I’d like you to stop reading now.  Take a moment to look over the following image.  Really read the words. (Click on the image and you will be taken to the owner site where you can zoom in on it.  This is an older image.  Hence, the 1:166 statistics.)

Can you hear the hurt of the adult autistics who created this poster?  Do you feel the pain your organizations are causing them?

Now, I’d like you to sit back and watch the following videos.  It is my hope that you will stop your campaigns against autism and start campaigning for it.

Start campaigning for the basic human rights for all people (this includes the autistic community as they are; not how you want them to be).

Stop making statements like,

“This disease has taken our children away.
It’s time to get them back.”

Thank you for your kind attention to this time-sensitive matter.


A devoted parent to a beautiful child who just so happens to have… autism.

P.S.  This is Amanda, and like my son…  she matters!



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