You said, "Here's your mirror and your ball and jacks."
But they're not what I came for,
and I'm sure you see that too.
So many times, there were no words, but swirls of emotion, pattern and image. Thoughts and feelings demanded saying, but I was mute. The other looked on with anticipation, then curiosity, then pity. Finally, I’d disappear from view. The other would move on to other others, those who communicated freely the complexity of longings within them. Sometimes there would be someone more patient, more able to see. When I had spent the few words I could muster, I would choose just the right vinyl disc from my collection, the one with words and music to pull up what I meant. For years, all through my late teens and twenties, this was the way I could say. I spoke with their voices, imperfect, but useful. Once in awhile, I think, someone heard. I was less alone then, and sometimes a more standard seeming conversation would start, triggered by the words I found or by questions of the other. Words that lent themselves to echolalic use. Sometimes the words were yours.
When I'm out in the street
I walk the way I wanna walk
When I'm out in the street
I talk the way I wanna talk.
-Out on the Street
This is not a fan letter. I played those records down to nothing. The stereo’s tone arm didn’t lift anymore when it came to the end, and I had to grab it quickly before it skipped backward, leaving deep scratches across your words. Yes, it needed fixing or replacement, but I didn’t do those things. I lived with things that were broken, choosing the inconvenient solution over and over in preference to a trip to the repair shop. Sometimes lighter scratches created an infinite loop of feedback, a word or phrase sung over and over, more mine than ever.
I never walked quite like the others and you told me this was okay. The words told me there were others like me. Invisible.
I wanna find one face
that ain't looking through me,
I wanna find one place,
I wanna spit in the face of these badlands.
There are some who think it’s the other way around. That autistic people are not completely “there.” I have been accused, but from this side of the neurological fence, it looks a little different. No one saw me. No one saw me. Sometimes this was okay, was for the best, actually. Invisibility felt safe, better than the alternative, usually disdain, criticism, anger, or worse. In the long run, it’s no way to live.
Imagine a group claimed your voice, but allowed you no say. They used your name to spread propaganda, and this propaganda made your life harder, all the while they claimed to exist for your benefit. This is the truth about Autism Speaks.
But there's this angel in her eyes
That tells such desperate lies
And all you want to do is believe her.
-She’s The One
One celebrity after another joins. They mean well, I think. People who have the money and fame. The cultural capital that can result from the human need to identify with something larger. It is a powerful urge, the need to join something.
You have been a part of my life for so long. I want to believe you meant me no harm.
Well darlin' can you understand
The way that they will turn a man
Into a stranger to waste away
The folks who run Autism Speaks are sure that autism is a terrible thing, that it must be eliminated. The stated goal is a world where autism is nothing but “a word for the history books.” Autistic people are never consulted about the decisions being made by this powerful group. Those who defend Autism Speaks will tell you that people with “real autism” can not speak for themselves. Some will go so far as to say that these “real” autistics cannot communicate at all.
I do not believe this. I do not believe that there are human beings who do not communicate. I know, though, that there are many who have not learned to listen to ways of communication that are non-standard. It becomes far too easy to impose one’s own will on others. To say, This is autism; this person cannot speak, cannot reason. To say This is not autism; this person has no right to be included. Just like that, all of the power in the hands of others. The others are not autistic, but somehow, they are entitled.
It happens just outside the sight of celebrities and “normal” people. Unless you are autistic, or your family member is, you probably don’t spend much of your days reading and thinking about what it means. You take the sound bites, read an article or two, watch 60 Minutes or Larry King. Nothing wrong with that, it isn’t your job to figure all this out.
What most people know is that there are a lot of loud voices saying that autism must be eliminated. Most people know the name Autism Speaks. Do they know the consequences of the melodramatic hand-wringing pity or the misunderstanding and the sometimes outright hatred for human diversity spread by the organization? People are denied employment, homes, and basic human rights in a world where disability is equated with helplessness and tragedy. It doesn't have to be that way.
God have mercy on the man
Who doubts what he's sure of.
I ask this of you: look at the numbers they use when they talk about us. Are there 1 in 150 people who "cannot communicate?" Are there 1 in 150 who are what some “advocates” call the “real autistics?” And if there are, does this mean that Autism Speaks should be allowed to make decisions affecting their futures? And if there are not, if I and others like me are included in the numbers they use, should we not be represented among the decision makers? Are we not being silenced, effectively, as the Squeaky Wheel turns on and on?
Lives on the line where dreams are found and lost
I'll be there on time and I'll pay the cost
For wanting things that can only be found
In the darkness on the edge of town
-Darkness on the Edge of Town
Please watch the video, “I Am Autism” one more time. Without the sound on this time. What do you see? I see people, not vacancy. Not empty shells. People who had no idea that their faces would be used to manufacture pity.
Dress him in a white shirt. Film him alone. This is what the call for videos asked.
What did they promise? To shine a bright light.
(Fade to darkness. Fade away.)
All lyrics quoted are by Bruce Springsteen.