Tuesday, September 29, 2009

For You

For Bruce

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.
-For You

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
-Jackson Cage

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.
-Brilliant Disguise

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.


  1. The video is so different without the sound. In different hands, it could so easily have been framed to talk about people instead of bogeymen, and about the power of community, and about hope for building a better world -- together.

    Thanks for another eloquent post (I've been lurking for a while.)

  2. So very well written... I hope he reads it.

  3. You made me weep with your eloquence.

    Thank you.

  4. Wonderful Bev, so moving and heartfelt and true. I cannot imagine some like Springsteen supporting such a hateful organisation as Autism Speaks, it's just not in keeping with the words he's written, the songs he's sung.

  5. This is the most powerful post I've seen addressed to Springsteen.

    If there is one post he should read, this would be it.

    Thank you.


  6. This post made me cry. I really hope Bruce Springsteen reads it and changes his mind.

  7. really beautiful post. thank you.

  8. I can't say anything. This post is simply perfect.

    Just to be sure, you ARE sending this to him, right?

  9. Yes, yes, yes. Invisibility really is safer sometimes, but others don't really try to see us whether we're trying to be invisible or not.

    Thank you for this, and for all of your other posts and videos.


  10. For too long now we have witnessed big media, Hollywood celebrities with personal agendas, and organizations with political motivations claim ownership of the conversation within the autism community. This has been to the detriment & exploitation of autistics, their families, and the general population. (via Rethinking Autism.com)

    Thank you for writing this open letter Bev. As an autistic adult as well as parenting a son on the autism spectrum, I have been disheartened on numerous occasions with respect to how Autism Speaks portrays the ENTIRE autism spectrum as hopeless & pathetic.

    I invite Bruce Springsteen to watch this video produced by Dana Commandatore of Rethinking Autism before going through with his plans to support Autism Speaks: http://www.rethinkingautism.com/RethinkingAutism/Newest_Video.html

    Again, thank you Bev, well done!

  11. My psychic ass saw this coming. Seriously. Before it happened. I even envisioned a headline: Et Tu, Bruce?

    Summer's long, but I guess it ain't very sweet around here anymore.

    It's this sort of thing that may give you some insight into why my politics are as they are. And no longer as they were.


  12. Hmmm...I got a File Not Found message on that link, Evonne. Could you run it through tinyurl and try it again?

  13. @evonne: It is a sad thing that Bruce Springsteen is going to collaborate with Autism Speaks. But I really love the Shakespeare reference in your title!

  14. Hi! I gave you an award on my blog! Go here to check it out: http://littlebearsworld.typepad.com/1/2009/10/when-life-hands-you-lemons.html I don't know if you're even interested in that sort of thing, but I thought you deserved an award! ;)

  15. This is great Bev. Really beautiful.

    I'm confused why someone else's vid needs to be pushed here? This work of Bev's is beautiful and is what is being discussed. If Springsteen watches that vid instead, he'll think he's looking at an audition tape for models in his next music video. Considering it contains actors who are representing a PR/media org. Very confusing.


  16. The Boss would be honored by this post. ;)

  17. ASpieboy,

    Thank you for the reminder. I was a bit behind on that detail, but I have sent it now.

  18. Bev,
    I am right there with you on the Autism Speaks video. I think it's awful and I would never want my child with autism to see it, lest he think he is the problem causing all that doom and gloom. He's not - he's the best thing that ever happened to me.

    But I do want to understand something from your point of view: you said Autism Speaks is making your life harder ... Can you explain a little more about that or point me to a post where you explain that? I get it that they do not represent adults with autism nor have any representation on their board. I disagree with them about a lot of things. But I want to hear how they make life harder for you specifically. Thank you for your time and help.

  19. @Hopeful: I don't blame you at all for wanting to protect your autistic child from this offensive video. I explained why here. I myself am afraid that one of my younger autistic brothers will find the video and develop a low self esteem because of it. In addition, I am afraid that my younger non-autistic brother will find it and develop ablist thoughts towards his own older siblings.
    In the post, there is also an explanation of how "autism awareness" propaganda ruins lives. The example is from an experience of mine from 2001, before Autism Speaks came into existence, but the experience I had can still be had today, frighteningly. I was fearing for my life and thought I was going to die from autism before I grew to adulthood. In addition, I developed a low self-esteem from the ablist attitudes that my peers developed from being around such propaganda.


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