So mostly what I used to do here is try to bring together news about autism.
And I've mostly stopped doing that for now.
And I want to explain why.
I got tired of the stories they tell about us.
One of the things I learned from following the news very closely for a few years is that mostly reporters tell the same stories, over and over. They just fill in the blanks with different names.
These are the stories people tell about autism:
1) Autism is ruining everything! And it's getting worse and worse!
This is your basic Autism Awareness Horror Story. It's about using the raising rates of diagnosis to scare people into giving someone money.
2) My autistic child is ruining my life.
Somebody's mom or dad talks about how the stress or expense or scary behavior of autistic children is ruining their lives. It's about getting more services.
3) This causes autism.
Everything causes autism! The internet, old dads, abused moms, antidepressants, highways, cleanliness-- whatever! This is about using the word "autism" to bring attention to some other thing that someone is all excited about.
4) Autistic person does thing
Described brilliantly by Zoe Gross here.
5) Someone did something nice for some autistic person.
I like this one.
6) This will cure autism.
No, it won't.
7) Someone did something awful to some autistic person.
I hate this one, but it's the one people read.
8) Some autistic person did something awful.
I hate this one, too.
What do we learn about ourselves from these stories?
That people view us as a problem.
That they think we are less than they are.
We know that.
Now we start teaching them that we are more than they think we are.
Now we start building structures to build each other up, because the tearing down is done.
The story they tell about us isn't good enough.
So we tell a better one.
April 4, 2013
Autistic people should eat a healthy breakfast.
Autistic people should be equal to everyone else.
Autistic people should be nicer to each other.
Autistic people should control our own bodies.
Autistic people should be recognized as real autism experts.
Autistic people should be welcome when we go to movies and fly on airplanes.
Autistic people should have teachers and doctors who understand us.
Autistic people should be respected.
Autistic people should be careful with ourselves.
Autistic people should flap and rock and squeal.
Autistic people should be able to act autistic and be taken seriously.
Autistic people should celebrate our autism.
Autistic people should have therapy and supports that allow us to reach our potential.
Autistic people should work hard to use our gifts to help other people.
Autistic people should be grateful for the help we receive.
Autistic people should dance and sing.
Autistic people should make love and have children.
Autistic people should be mourned without qualifiers when we die.
Autistic people should be listened to,
Whether we speak with our voices or not
Whether we speak with words or not.
Autistic should run companies and families and countries.
We always have.
We have always been here and always will be.
We are not a problem.
We are not a crisis.
We are not an epidemic or a tsunami.
We are autistic people.
We are here.
And everyone should be happy about that.
William Davenport of Talk Story Films, who made the wonderful documentary "Too Sane for This World", has made a new film called "Citizen Autistic", about the autism rights movement. Its featured subjects include Ari Ne'eman, Zoe Gross, Robyn Steward-- and me! I love the way I come across in this movie and the fact that I get to talk about thAutcast in it. Lots of people have ideas about Ari being some kind of fire-breathing radical, but he's a wonderfully sweet, smart guy who cares about all kinds of people, and you really get to see that here. Zoe is one the emerging leaders in autism advocacy, whose contribution to a meeting with President Obama is a highlight of the film. Others are a meeting of AASCEND in San Francisco and Robyn Steward's dissection of an Autism Speaks walk. Robyn works with autistic people like herself.
The film is nearly finished, and you can see the current version above. You can also donate to help distribute the film. This is a movie we really want shown in film festivals, and the entry fees can cost thousands of dollars. Please watch and please donate if you can.
I can pretty much tell that I'm wasting my time talking to a parent if he or she says something like, "I have a child with autism. I love him with all my heart. I could never, possibly be bigoted against people with autism. It's very cruel and hurtful for you to say that!"
Because here's the thing. I'm autistic. I can be bigoted against autistic people. I'm gay. I can be bigoted against gay people. When I was visiting my parents, and volunteers from a gay rights group came to the door, my dad rolled his eyes, in front of his openly gay son, and said, "I don't think we need to listen to that." When my mom told my aunt recently about my autism, my aunt immediately started talking to me about how violent autistic people are. You may think your family is better than mine, but I think these things just run deep in society, and we're part of it.
My domestic partner Max is my favorite person. He's smart, funny, handsome, sweet. He's also been in great pain for much of the past week, with an infection that required him to spend one night in the emergency room and may require additional hospitalization. As we fight these things, I think how fortunate both Max and I are that we do not have AIDS, that we are still alive.
People want to forget how many of us died.
They want to forget the murderous silence of our governments.
They want to believe that the gay men who died of AIDS in the 1980s were so promiscuous and irresponsible that they more or less deserved it.
I am reminded by the comments on this Towleroad piece on the recent death of New York City mayor Ed Koch that there are many gay men who want to believe that their brothers who died, who are still dying of the plague, were totally alien from themselves. I'm guessing that lots of those guys would respond like those parents who drive me crazy do: "I can't possibly be bigoted against gay men. I'm gay. But those guys died because they were irresponsible."
My friend Dean, who died when I was 25, was infected by his first boyfriend when he was sixteen. Not in a bathhouse. Not with drugs. Young love. And he died. He was a good guy, so much nicer than me, would have made the world so much brighter.
He was not garbage.
He did not deserve to die.
And no one deserved to die as David France describes gay men dying by the thousands in New York City:
We regularly received phone calls from St. Vincent patients complaining that staff members fearing the disease was airborne refused to bring them food, instead piling their trays outside their doors, or that terrified nurses wouldn’t bandage their wounds or change their soiled linens. It was like something out of a Saramago novel. I personally brought this information to Koch myself, as the first journalist with gay-media credentials to address him in a Blue Room press conference. He responded explosively. “Don’t be ridiculous,” he told me.
Those were the early days. As the epidemic mushroomed, the city’s hospitals simply ran out of space for all of the patients, and again he was silent. Deathly ill people were routinely turned away. At some hospitals, patients were lined up on gurneys along the emergency room hallways for days on end awaiting medical care that never came. When things went south, we all knew there was only one funeral home in the city — the gentle people at Redden’s on 14th Street — where we could bring our friends’ remains.
I do not recall Koch ever acknowledging these medieval conditions. He surely never took action, nor did he spare an ounce of sympathy for us in the trenches, not in public at least.
What does this have to do with autism?
Charli Devnet's piece about "The Dark Side of Aspergers" is what it looks like when members of a marginalized group have absorbed the biases of the majority:
If Adam Lanza had only destroyed himself, no one would have noticed. He would have silently departed this world, leaving “few footprints in life,” as the New York Times put it. If he had only killed his mother, well-meaning people would have shaken their heads and said exactly what they said about my neighbor, that here was another troubled young man who “snapped.” It is because Lanza exploded in such an unusual, deliberate and almost apocalyptic way, that we are so shaken. If we allow that Lanza might have been on the autistic spectrum it might help us take a candid look at the dark side of living on the spectrum.
Aspies are prey animals, said Tony Attwood at an Asperger’s conference in 2012. We are much more likely to be victims than villains. Wounded prey may, however, grow desperate and strike back. A lifetime of being bullied, rejected, and relegated to the periphery of life can give rise to anger and bitter fantasies of revenge, especially perhaps among lonely young autistics that have grown up in a culture where violence is glamorized and who may turn to perfecting their skills at violent video games in lieu of a social life.
"Self-hatred" is most common term for this, I think, but that seems wrong to me.
Autistic people and gay people, etcetera, are part of a world which is biased against us.
There is no good reason to think we should be immune from that bias, and we don't have to hate ourselves to experience it.
Max is older than I am. He has been openly gay for about as long as I have been alive. He has fought courageously and successfully for our rights. He was one of the first who got top security clearance when President Clinton reversed the ban on gay people having it in the 1990s. And he still carries bias against gay people
I disagreed when people went to court to try to get Proposition 8 overturned after it made same-sex marriage illegal in our state. I like elections, and I think ultimately minority groups win by making elections stronger, not by trying to undo them when we don't like the way they go. But what happened in the trial was that gay people laid out the difference that having full access to marriage made in their lives, in their status, in the eyes of their families.
Max is my domestic partner. It is not yet legal for him to be my husband. And he needed that trial to understand that separate but equal is not okay. He needed legal testimony to lose that piece of his bias against people like himself, after decades of fighting for our rights.
Think about that.
And don't tell yourself that you can't be biased against autistic people because you are one, or because you are related to one.