Please watch this amazing video by Amanda Baggs, a videoblogger who is classified by her doctors as a “low-functioning autistic.” She is unable to talk and appears to be totally disconnected from the rest of the world, but she is extraordinarily eloquent and descriptive of her insular world when given a computer keyboard through which to communicate. This video, which she shot, edited and posted on YouTube under her online name SilentMiaow, begins with several minutes of her doing repetitive actions and making chant-like noises – things that non-austic people might describe as stereotypical of people with austism. It has an eerie, performance-art quality to it – until you get to the second half, when you see her translating and interpretating what you’ve just seen, explaining her actions’ meaning through the use of a computer-synthesized voice. The video inspired CNN to do a special on her tonight. She’s also an active user of Second Life, and has an avatar that looks and acts like a low-functioning autistic person.
Her blog captures just how eloquent she is as a communicator when using assistive technology to capture her thoughts. In this post, she describes some basic advice she had been given when she first began coping with autism:
I eventually want to do a video series of basically things I wish someone had shown or told me when I was a kid.
One really big one is how to recognize overload. I did have a few crude techniques worked out, but I didn’t know what they meant, or how to respond to them.
Basically, I carried certain objects that normally produced certain sensations. I had a necklace with piano wire in it that made soft bell-like noises. I had a scarf made out of multicolored criss-crossing ribbons. I had soft clothing.
The more overloaded I got, the more the soft bell-like noises turned into loud and obnoxious clanging that hurt my ears. The multicolored scarf became painful to look at rather than interesting. And the soft clothing turned to sandpaper.
So one good way to recognize overload, if you don’t have some other way, is to have some sort of object that you know what it’s like when you’re not overloaded. If it becomes more and more unbearable in some way, you’re getting more and more overloaded (and should probably find something to do about it).
Her blog is called Ballastexistenz. At first I thought it might be a cyberpunk reference, but its origins lie in Nazi Germany’s treatment of people with disabilities. Amanda explains:
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 Menschenhulsen (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.
CNN advertised their special by saying “You’ll never look at autism the same way again.” They totally nailed it. Watch the video. -andy