Above: Kassiane giving the The American Sign Language sign for “autism.” The sign, which evokes the notion of “closed off,” raises issues in the neurodiversity community.
Kassiane, who prefers I don’t run her last name, is a neurodiversity advocate based in Portland, OR. She was born autistic & epileptic and has spoken at neurodiversity conferences around the world. She spoke to me via instant messenger. You can read her blog here.
Klint Finley: Could you give us a brief overview of what “neurodiversity” means, or at least what it means to you?
Kassiane: Neurodiversity, the word, simply means the whole variety of different brain wirings people have…from the different kinds of normal to the different kinds of not so normal. Then there’s Neurodiversity, the movement which is the shocking idea that people with non standard wiring are human and deserve to be treated as such without being “fixed” first.
What conditions may be included in the movement?
Autistic/Asperger people tend to make up the base of the movement, because we latch onto things so well, but we’re really inclusive…ADHD, learning disabilities, mental health issues, cognitive conditions like Down Syndrome, epilepsy, migraines, neurotypical allies, Not Diagnosed Just Weird…we’re accepting of pretty much everyone.
Is there a point at which a line is drawn between “neurodiverse” and disabled?
The 2 aren’t mutually exclusive. You can be different and disabled, but being disabled doesn’t keep you from being a human worthy of respect.
How did you get involved in the neurodiversity movement?
I was born autistic & epileptic, & being told I’m broken hasn’t ever gone over well with me. When I was 16 or 17 I read autistics.org and saw there are other people who feel the same way, and it was like “Hot damn! community! whee!” and it just snowballed from there.
Are you involved in any particular organizations?
I’m involved with ASAN-Autistic Self Advocacy Network, & have done several conferences for Autism National Committee.
Can you tell us about some of the activism you’ve been involved with?
Way back in the day at a big conference we petitioned to get a very abusive school kicked out of the exhibit hall of said large conference. Since the school in question doesnt believe in human rights it was big gesture, small step–we’ve been working to have them closed down for years.
ASAN has recently taken to picketing events that seek to eradicate autistic & other neurodivergent people, to show the public that eradication isn’t the only viewpoint. We’ve also done a lot of writing to congress and other important people.
I was also involved in the petitioning to have a teacher in Florida who voted a kid out of her classroom delicensed, though that’s all still pending.
Can you be more specific than “events that seek to eradicate autistic & other neurodivergent people”? What particular organizations do you think are problematic?
Oh, Autism Speaks. They totally need to climb a rope and let go. As do Defeat Autism Now!, TACA, and and Generation Rescue.
In what way do they seek to eradicate autistic people?
Prenatal testing to prevent us from being born, specifically. And then there’s the wackaloons who think it’s ok to kill us, who are always fun.
Who are the Wackaloons?
It’s a generic term that here means “person so far disconnected from realityland that I’m not sure how to deal with them” there are wackaloons in all those groups. They pop out of the woodwork when a kid is killed, or an adult, which happens far too often.
Gotcha. And so some wackaloons think it’s ok to kill autistic people who have already been born? What, as some sort of euthanasia? How common is that?
Well, this website is incomplete. And with every one of those in my memory, there were people defending the murderers. Not to mention the one I followed most closely in 2006 or so, where the whole town and even the newspaper were supportive of the killer.
Should neurodiversity be important to “neurotypicals”?
I assume that a cookie cutter world is boring to you. And many people won’t be neurotypical forever. Besides that whole “civil rights” thing, which majorities aren’t always so awesome at.
By “many people won’t be neurotypical forever” are you referring to cognitive decline people experience with age?
Cognitive decline, head injuries, infections that affect the brain, neurological diseases, stroke…brains are fragile
Do you think the criminal justice system should treat people with an autism spectrum diagnoses differently than a “neurotypical” person?
It depends on the person, & on what they did. Like, if I go knock over the 7/11, I’m fully capable of knowing that’s wrong and of not doing it. But if someone has an irresistable compulsion to, say, go stare at fountains and gets arrested for tresspassing for staring at a fountain, their neurology may need to be taken into account.
Autism surely isn’t a get-out-of-jail-free card.
What do you think about use of the “r-word”?
Uhm. I hate it with the passion of 100,000,000 firey suns and have nearly gotten the shit kicked out of me on the bus for expressing this loathing.
To be honest I hadn’t really thought about it much before I read you ranting about it on Twitter a while back. But on further examination it’s weird how many people (myself included, unfortunately) would use the word without giving it a second thought, but would never defend the use of racial slurs.
Exactly! or they get all offended about homophobic slurs, but they throw around the r-word like a tennis ball. seriously? It’s not ok. It’s only remained ok because the people who it’s actually slamming are often unable to tell the ones using it to shove it.
It’s all about the power dynamics, & lack of creativity in insults.
What about using the suffix “tard” to create new slurs for specific groups (itards for Apple users, Paultards for Ron Paul supporters, etc.)?
That’s not any better. It’s not even creative. And it still comes from a place that says it’s ok to slam people who are cognitively disabled, and from a place that says “these people hold irrational to me beliefs because they’re cognitively impaired”
A year or two ago I read an article musing on the possibilities of creating pills that could temporarily “cure” or even *cause* autism. The basic idea is that someone born with autism could take a pill to become neurotypical at a party, or a neurotypical person could take a pill to become autistic temporarily to accomplish some particular task. Scientific feasibility aside, what do you think about such a possibility.
It’d be confusing in the extreme.
I couldn’t function in an NT brain, any more than you could function in my autistic brain. I’m USED to hearing and seeing and taking in everything and focusing on the details. Take that all away & for the duration of the dose, I’d be lost.
Give an NT autistic-like thought processes and perception, & they couldnt use the pattern recognition or hyperfocus or whatever…they’d be too busy looking for better earplugs and sunglasses because the lights are loud and flickering. Scientific feasability aside, there’s no way anyone would actually use it.
You can dual boot a computer. You can’t dual boot a brain.
The Autism Rights Movement article in New York Magazine.
Autistic Self-Advocacy Network
January 30, 2010 at 4:27 am
Thanks for this, both of you
Klint do more interviews!!
January 30, 2010 at 6:47 pm
Adam – your command is my wish. More interviews forth coming.
Glad you liked it!
January 30, 2010 at 6:59 pm
Great interview from an important emerging topic. Linked from disinfo.com
January 30, 2010 at 10:56 pm
Great interview! I hope you give more coverage to autism issues going forward – I think there are a lot of autistic folk in the tech community.
January 31, 2010 at 2:45 pm
Got any ideas as to how young women like Kass and people who support the autistic community might bring these thoughts into mainstream media and counter the positions of groups like Autism Speaks ?
February 11, 2010 at 6:47 pm
Wonderful, wonderful. Great interview. The word “neurodiversity” needs to be included in many more conversations.
February 16, 2010 at 5:35 am
“Brains are fragile.” Very good interview.
February 21, 2010 at 8:42 pm
“Brains are fragile.”
Very cool interview.