Wednesday, October 7, 2009

The website that flipped my brain

I personally believe that most people never really change their minds about how the world works. This became an apparent phenomenon in communication and rhetorical theory when supposed "silver bullet" theories of persuasion were demonstrated ineffective when they bounced off the walls of people's disposition and existing beliefs.

Which is why it is always surprising to find something that changes your mind on a topic completely in ways you never expected. It is also surprising when changing your mind forces you to admit things you did not want to admit about what you used to believe. Sometimes these admissions make you feel guilty.

The following website did this to me a few years ago: http://ballastexistenz.autistics.org. I was led to this website by the following video: http://www.youtube.com/watch?v=JnylM1hI2jc

Okay, so here is the mind flip. Previous to watching this video, and then following to the website, my belief system was as follows:
  • people who are so impaired that they uncontrollably moan and hand flap (or other behaviors we would consider odd) are so impaired that their intellect is also impaired
  • likewise, people who are so impaired that even though they can hear and can vocalize but they still cannot talk are also intellectually impaired
  • the level of intellectual impairment is strong enough that they really don't have the level of self-awareness to appreciate what is happening around them
  • as sad as their existence seems, it is not as if they are really missing anything - as if life is kind of a blur to them - almost a sub-intelligent madness of sorts

So, I see this video (you have to watch it to see what I mean), and then I follow to the website. In just a few minutes, the entire belief construct had to come tumbling down. This isn't something that comes crashing down without pain - because you have to admit that you are participating in a belief construct that has led to cruel isolation, institutionalization, ridicule, patronization, etc. for a group of people that are just as intellectually capable of perceiving the world around them as anybody.

The crash came from reading the writings of the website author. She is the individual in the video - she cannot speak. She flaps her hands uncontrollably. She emits a humming "language" that is a sensory interaction between herself and the elements in her environment (the water from the faucet, etc.). Every single bit of behavior in the video appears odd, strange. Most people (myself included) would have looked at her and just thought she was an invalid - incapable of formulating real thought.

But contrast that, then, to her writing on the website. As she explains in some of her posts, the writing comes with extreme effort. It is taxing for her to do it. But she forces herself to because she is an activist. The quality of the material, of the arguments and the writing is incredibly high - and not high in a "oh, how cute... the cripple is saying something" way you might get on some sort of Oprah show. This is high quality as in "Geezus, I wish the folks at Newsweek wrote this well once in a while". This is hard hitting, unapologetic, unsentimental hyper-opinionated stuff with lots of edge and incredibly well constructed arguments.

So, my reaction. Frankly - horror. The best analogy I could think of was premature burial, maybe waking up in surgery. I suddenly thought to myself - "Oh my god, what must it be like to be tossed away in institutions, or to be treated as badly as these people have been, and to be fully aware and awake and able to fully feel all the pain and emotions?" I imagined what it would be like if I were suddenly stripped of all ability to communicate, and then had some weird movement quirks tossed on top, but otherwise still the same... and then to be handed over to a bunch of people who didn't know there was a "me" inside. I suddenly realized that for hundreds - thousands - of years, this is what we had been doing to autistic people.

I excused myself from the guilt. I blamed it on ignorance, product of my times and all that. Fact is, though, I still feel bad. I also have to wonder if I ever would have bothered to watch the video if my own son were not autistic, or if my oldest daughter had not had so many developmental issues growing up. There is a part of me that wants to call me a hypocrite for letting my mind be changed... "You wouldn't if it wasn't impacting you directly." - that's what the little voice says.

But I guess the only important question is, what do you do with the information?

For me, it has meant a lot to how I interact with my son, Ethan. My gut reaction is to assume that if he isn't behaving the same way I expect that he isn't "getting it" - frankly, my gut reaction is to give him about as much credit as I might give a dog. I have to fight this gut reaction, though, and force myself to act as if he "gets it" just as much as all the other kids. It is so difficult, because all the cues for getting it (looking in the eye, acknowledging with the correct verbal response, etc. - its hard to describe the gap) are missing and are replaced with every indication that the kid is just somewhere else. But still, I pretend I am not seeing it and talk to him like I would talk to a kid that isn't acting autistic.

What I find is that he actually does get it. As far as I can tell, he gets things on a level consistent with other kids his age - he just has all these autistic issues that get in the way. I can say something to him like "Ethan, go find the remote control" and he will go around the house looking for the remote control. If I ask him "Ethan, where is the remote control", however, I will get a nonsense response like "Ethan not remote control"... if I get a response at all.

He even makes jokes. Almost all our conversations are scripted. For example, he might ask "Daddy, do you want to eat an apple?", and then "Daddy, do you want to eat waffle?" and then back to apple, and then waffle. He does this because he has the script for it memorized - these are not extemporaneously composed sentences. But then, in the middle of it, he looks at me and said "Daddy, do you want to eat Chewbacca?", and he gets this big snarky grin on his face and starts laughing his ass off.

So, now, pretend I had never suppressed my gut instinct. Suppose I never commited to communicating with him like he knows what I am saying. Suppose that his therapists never believed that he was capable of this level of understanding.

When he was younger, he made zero eye contact. He wouldn't turn his head if you called his name. If he wanted something, he would grab your hand, and put it on the thing he wanted - he saw you, and your hand, as a tool - not as a human being. We had to put weeks and weeks of training in to teach him to say "Daddy, I want ". It was incredibly difficult.

The fact is, he would far more easily just sit and play by himself and never interact with another human at all. In lots of ways, it really was easier to treat him like a dog. It would have been so much easier to leave him that way, and just assume that is all there really was with him. That is what society has been doing with autistic people all along. At some point, though, they get too big and too old to just let sit around - their desires and needs get more sophisticated - and they become physically strong enough that their actions can hurt themselves or the people around them. At that point, this person who nobody has learned how to talk to, and that has not been taught how to talk to other people, is put away somewhere. Maybe they are left on the street, maybe they are locked in the basement, maybe they are put in an institution. Society rejects them.

But I realize now that Ethan just needs help. How much help is hard to forsee, but he is a fully intelligent, thinking, feeling individual that is capable of realizing what is going on around him. The possibility exists that the amount of help he needs may someday exceed our capacities as parents (there are gut-wrenching horror stories out there) - but knowing that being autistic, even when the symptoms are very overt and seemingly disabling, does not equate to some sort of below-conscious state has been an important tool in my belt as a parent.

That is the most important way the website and video affected me. Not many things do that to me.

There are other ways I was affected - more mildly. I was impressed, for example, that a person could be so eloquent when they had spent so much of their life unable to talk to other people. Most people I know have a very difficult time writing anything coherently. I was impressed, even more so, by the viewpoints and arguments in the blog postings, all of which were so novel and new to me. It is rare that you get to hear a totally new idea tossed about, and BallastExistenz has plenty of them.