Square Talk: The Social Model

A Job Interview

Instead

You want to be helpful. Really. Useful. You were surprised, recently to find yourself finally seeing it, the harm that is done by groups like Autism Speaks. That video, that disembodied voice, Big Scary Voice and its claims of destruction, you saw this time how these omnipresent repetitions build a world where autistic people and people with other disabilities are shunned, marginalized, treated in so many ways as less than human. Less than real. You get it now. But what about that walk coming up? What about that inbox filling with walks and runs and bake sales and pledge drives and other pleas for contributions? These have been ways to express your concern for...I don't know...something about autism? Someone you know?

It's harder now, maybe, to know what to do, now that you've seen how one large and powerful group monopolizes the public attention, drains it, until the stream of misinformation is absorbed unquestioned, unnoticed even. It's harder now, and that's a good thing.

Here are some options to consider while you are not "walking for autism."

• Make a contribution to an organization for autistics by autistics. Autistics.org always needs support. ASAN is another option.
• Contribute to another disability rights organization.
• Donate money or time to a homeless shelter or food bank in your area. The unemployment rate for autistic people is extremely high, more so even than the rate for people with disabilities in general. There are many autistic people living on the streets and in shelters.
• Sponsor a registration at Autreat for someone who would not otherwise be able to go.
• Read more blogs by autistic people. There are some folks out there who are struggling. A word of encouragement might make a difference to someone who is desperate.
• Lobby for an end to seclusion rooms and restraints in schools.
• Challenge inaccessible spaces, wherever you find them.
• Invest in companies that include people with disabilities in key roles.
• When you see someone being bullied or harassed, intervene. It is not enough to just not actively participate.
• Invite an autistic person to lunch.
• If the person agrees, then have lunch. Talk. Listen.
• Listen.
• This might take a long time. Listen more.
• Consider expanding your definitions of words like "listening," "speaking," and "communication."
• Repeat as needed.

Thank you for your contribution.

The Daily Squawk: Redefining Canines

Canine Advocates Urge Removal of Pomeranian, Shih Tzu, Others from the Dog Spectrum

Should all dogs be considered equally doglike? Well known canine advocate Darrell Hogarty doesn’t think so. “People who live with some of these smaller breeds have become too vocal,” he explains. Hogarty believes that the enthusiasm of small dog aficionados obscures the problems of real dog owners. “They claim they can live in apartments and condos. The general public is starting to think that dogs like my Rotweiller don’t need large fences to keep them from bolting.” What’s worse, Hogarty says, is that the claims of small dog owners that food costs and training needs are manageable may keep the owners of real dogs from receiving the services they need.

People are starting to think that dog ownership is some sort of ‘cutesie club.’ It’s anything but that,” adds the canine advocate who prefers to be known only as WTF. “It’s not that I have anything against them. I have a toy poodle myself, but I can tell you he’s no dog! My Saint Bernard goes through a large bag of Purina Dog Chow each week. Who can afford that?”

Poop is a major problem for the owners of real dogs, too. Canine advocates point to the statistics or rumors indicating that nearly 80% of canine affected marriages fail due to arguments over whose turn it is to scoop the yard. “I’d like to invite any of these diversity loving types to come over and give my dog a bath,” declared WTF. “But you don’t see the Dawgz R Lovely crowd lining up to give it a try, do you?”

Those who prefer keeping small dogs as part of the spectrum are quick to point out that the Chihuahua’s bark can be as disturbing as that of a Weimaraner. Small dogs sometimes bite, too, explain diversity advocates, some of whom reject the words “pet” and “owner” in favor of more radical terms like “companion.”

Claims that size shows no correlation with ease of training do not impress Hogarty, for whom defining a dog is a simple matter. “It’s just common sense. Is it bigger than a dirt bike? Can it be used to scare people? That’s a dog.”

Hogarty adds that removing these smaller, cuter breeds from the current definition of “dog” could go a long way toward solving the canine overpopulation problem. “Of course their numbers should still be counted when new pounds and shelters need to be built,” he added. “We ought to get some use out of them, eh?”

************

All kidding aside, there are many dogs and other animals in need of homes. If you are thinking of sharing your life with an animal, please consider adopting, not purchasing from a store or breeder. Spay or neuter your pets, and if you are able, please consider a tax deductible donation to American Animal Rescue Society. AARS depends on its volunteers and foster homes; 100% of donations go to animals in their care.

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.
-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.

What Kind of Troll Am I?

If you are a reader of blogs about autism, you have seen your share of comments denouncing the views of self advocates around the web. Sometimes they are personal attacks on autistic people. Many rehash the same tired "Not Really Autistic" meme or promote urban myths about the causes of autism. Most feed pervasive stereotypes of one sort or another. Still others are so vile I won't describe them even obliquely.

Most readers of this blog tend to be civil and capable of using reason to make their points. However, if you are someone who enjoys being abusive toward autistic self advocates and those who support their goals, you just might be wondering…What kind of troll am I? Here is a survey so scientifically valid, it is sure to be linked from AoA ASAP.

What Kind of (Autism) Troll Am I?

1. My favorite tactics for engaging in an internet argument are:

a) Logic and reason.
b) Self pity and demands.
c) Cursing and YELLING.
d) Libel and Terroristic Threatening.

2. My definition of autism is:

a) A broad spectrum of conditions evidencing differences in communication, social behaviors and repetitive behaviors or intense restricted interests.
b) Limited by the characteristics I see in my own child.
c) A tragedy, a kidnapping soul stealer, a monster or a train wreck.
d) Mercury poisoning!

3. I often visit the blogs of writers I strongly disagree with because:

a) I believe it is important to learn about a variety of viewpoints.
b) Someone needs to help them see how wrong they are.
c) I do my best to make them look foolish.
d) These people are not entitled to speak. Only I know the truth about autism.

4. When I read a post I disagree with:

a) I go to my own blog and write about the issue.
b) I jump right in and correct the person’s mistake! For example, “I know you think you have been discriminated against, but as the parent of someone like you, only more so, I can assure you that you are wrong again!”
c) I know the person who wrote it is a liar. He/she is not even autistic!
d) I litter the comments section with swear words and insults. They deserve it!

5. My response to someone who asks for respect is:

a) I guess my input isn’t needed here.
b) What are they talking about? I said “person with” autism, didn’t I?
c) What about me??? When do I get respect???
d) You are an &*)#ing &%^#! and you mother is *&#@*!

6. My child is different from the bloggers on the Hub because:

a) The writers on the Hub are all adults.
b) My child is autistic! Not like these fakes!
c) I don't have children, I have a real disability.
d) My child has no abilities or skills whatsoever.

7. No matter how many times you tell me, I will never believe that:

a) People can be so rude.
b) You see autism as a disability.
c) Neurodiversity means recognizing a the full diversity of neurotypes as valid human presentations.
d) Autism Hub blogs are not financed by Big Pharma, the earth is round, and people have landed on the moon.


8. Which of these comments best exemplifies your writing style:

a) "I strongly disagree with your viewpoint!"
b) "I'm sorry if it hurts your feelings, but autism is not some silly little clique as you obviously think it is."
c) "People like you are depriving everyone else of the cure they deserve."
d) "Shut up, you dumb @*^#."

Scoring: Total your responses for each letter. Are they mostly in one category or another? If so, your identity has been revealed! See below for details. Otherwise, you may find that you are a combination of trolltypes or belong to a category not listed here. Either way, don't bother leaving an offensive or libelous comment here. It will be promptly deleted.

Bettroll: Bettroll doesn't mind calling a self advocate any disgusting name he can think of, and may even threaten the lives of those who are too vocal in their self advocacy. Believes autism is an injury that can be cured, but this takes around 75 years. Answers mostly (d).

Lurtroll: This one claims to be silent while speaking loudly and carrying a big chip on his shoulder. Uses phrases like "you people" liberally. Claims to know everything about his favorite bloggers from diagnostic labels to what brand of toilet paper they use. Demands ever more personal information while hiding behind pseudonym. This may be you if most of your answers were (c).

Nottroll: When disagreeing with something, this person is civil about it. His or her comments are rarely deleted or disapproved by blog owners. If you chose mostly (a) answers, you are probably not a troll.

Agritroll: This troll arrives with hoe in hand, ready to dig in the dirt. Some might think she is preparing the soil for new crops. Don’t believe it. Is that a shovel in the back of her pickup? She comes to bury self advocates in her generous piles of manure. If the (b) responses best describe your trolling, this one may be you.

Disclaimer: These trolls are semi-fictional. They are not generally recognized diagnostic categories (though some have been proposed for inclusion in DSM V).

Responding to "I Am Autism"

A nice collection of links to posts about the "I Am Autism" Public Disservice Announcement can be found at I Speak of Dreams.