Pro-neurodiversity, pro-vaccines, pro-disability rights, anti-cure.

Now Katy doesn't want to live in Smithton anymore.

Wednesday, April 13, 2011

An Open Letter to Robert MacNeil and PBS

To Whom It May Concern:

Hi.  My name is Kathryn Bjornstad, and I am an autistic woman.  I am a senior at the University of Missouri at St. Louis, a history major, due to graduate in December.  I’m 22 years old, and I am working on setting up a chapter of the Autistic Self Advocacy Network in St. Louis.

This month, as I’m sure you’re aware, is Autism Awareness Month.  As many feel awareness is no longer enough, it is also Autism Acceptance Month—and I am more in support of the latter.  Autistic people, like many other disabled people, are often discriminated against and ableism is allowed to go unchecked and unpunished in full view of the public, even in the media.

Which brings me to my point.  I saw a piece today on your autism documentary.  And I wasn’t too happy.  A lot of people weren’t happy.  You see, I have come to realize over the course of several years that my autism has not held me back nearly as much as ableist stereotypes of autistic people have, and the myths of autism are so pervasive that I am even discriminated against when I go to see the doctor. 

I was home alone when I read the article where you described autistic people (like me) as missing a key ingredient in being human, the most important ingredient:  Empathy.  I was stunned, hurt again by this stereotype that gets flung out every so often in the autism debate.  Autistic people don’t have empathy. 

When I found out I probably had autism, I was 17.  I remember looking it up on the Internet and being horrified by the descriptions I found of emotionless people, children turned into empty shells of people.  They didn’t have empathy.  That was what I was told.  And I was terrified that I might be one of them.

But things changed.  I grew up.  I found out more.  I met other autistic people.  It turns out that empathy thing is a complete and total myth.  That’s right, you just wrongly accused almost 1% of your audience of being emotionless when they aren’t.  There isn’t a real, concrete definition of empathy and it can be used to describe a number of different things.  But the stereotype of autistic people living without empathy is as harmful as it is pervasive.  When I try to stand up for myself, I will hear mothers of autistic children say that I can’t possibly know what I’m talking about.  I don’t understand their position because I lack empathy.  My views can therefore be entirely ignored, no matter what I say, and no one sees the irony.  I might perceive someone who calls another person emotionless without thinking first of whether it would hurt the person’s feelings as, well, lacking empathy.

I cried reading your article, watching the interviews, thinking of the millions of people who would see it.  The so-called educational documentary completely ignored the views of autistic people, asking only those who knew them what autism was.  And because of the blatant ableism inherent in the interview selection, no one who watched it would suspect that autistic people have feelings.  Millions of people will now feel free to fling that insult at people like me, say I don’t understand them because of my lack of empathy when I cry about it, and use it to diminish the importance of our words.

And the description of autistic people as causing random violence is even worse.  The vast majority of the autistic population is unemployed, and do you wonder why?  It’s not because we’re violent—we’re often the victims of violence, often from our caregivers and our parents.  It’s because the stereotypes that are spread about us are so  horrible that no one would ever consider hiring us, so even autistic people who are searching for jobs or who are qualified for jobs will often find themselves overlooked.

My fiance came home this evening from work at 4:00.  We had dinner and talked, and he was tired, so he decided to go to sleep.  I curled up next to him and laid my head on his chest.

After a few moments of silence, I said, “Sean?”

“What?” he asked, the words muffled by his sleeping mask.

“What’s empathy?” I asked. “Isn’t it like sympathy?  Why do people say I don’t have it?”

He unhooked the mask and set it aside.  “There’s two definitions,” he said. “One is feeling what other people are feeling, feeling sad when they’re sad, and so on.”

“But I have that,” I said.  “I hear about someone’s family member dying and I’m sad for days, even if I didn’t know the person who died.”

“I know,” Sean said.  He propped himself up on his arm to look at me.  “The other definition is to be able to tell what someone’s feeling by looking at them.  And that one…you have a little bit of trouble with.”

I chewed my lip, remembering the cartoon smiley faces I’d studied in grade school and how the emotions looked so different on human faces.  “But…I try,” I said. “And sometimes I can tell.  And I try to imagine how a person might feel given what’s going on at the time.”

“And that’s empathy,” Sean said. “You have it.”

I sighed.  “But…that guy from NBC.  He’s going to say those things and people will believe him.  Even though it’s not true.”

“He’s a dick.  Lots of people are dicks.  You don’t have to listen to them.”

“I’m supposed to fight back against things like that,” I said.  “Children are going to see that program and think…” I wiped away tears.  “They’re going to see it and think they’re monsters.  And so will their parents.  And it’s going to hurt them.  Not me, because I’m an adult and I know better, but it will hurt them.”

Sean stared at me and I closed my eyes, letting tears roll down from my cheeks onto my arms.  “That’s not fair.  You can’t go on TV and say—and say that black people or Muslims aren’t human.  People wouldn’t let it happen.  So why is it okay for us to not be human?”

“Hey.”  He stroked my cheek.  “It’s going to be okay.”  I kept crying and he held me as I calmed down, and eventually he fell asleep.  I couldn’t sleep.  I started writing.

You say I have no empathy.  What I want to know is, where is your empathy?  Where was your empathy when you stood in front of a camera and told millions of people that 1 in 150 people were barely human, that many of us were violent, without thinking of how serious the consequences would be for us?  Autistic children are being arrested by people who don’t understand what a meltdown is.  Autistic people are unable to get jobs.  Autistic people are being subjected to horrible and unscientific treatments in the name of curing autism.  That is not justice, and by failing to speak with autistic people themselves you are failing to present an accurate picture of us.  By spreading untrue and harmful stereotypes you are encouraging discrimination against us. 

Please consider speaking with autistic adults about how they see themselves and their disorder, and you will understand why your words are so horrifying to us.  You will understand how wrong you are about autism and empathy, and you will learn a lot more about autistic people than their doctors, teachers, and parents could teach you.

I am Kathryn Bjornstad, and I am a human.  I deserve your respect.  I have not yet received it.  I dare you to change my mind about you.


Thursday, April 7, 2011

"A Voice for Autism?" Not with Autism Speaks.

Those of you who have Facebook friends in common with me will be familiar with the news going around:  Cafe Press is donating 10% of all autism-related sales to Autism Speaks.  You can read about it here.  I heard it from Paula C. Durbin-Westby and several other friends have posted about it.  The reaction I've seen has been purely negative. 

I commented on Cafe Press's blog.  So did some other people.  Our comments seem to be awaiting moderation still.  I identified myself as an autistic woman and explained, briefly, why donating to Autism Speaks was a bad idea.  They call their campaign "A Voice for Autism" and the voices of autistic people are being ignored.  Autism Speaks fills the function of making non-autistic people feel good about themselves for donating a quarter to those poor disabled kids, and if we disagree we are ignored or chastized. 

You might wonder, what's the big deal about Autism Speaks?  I've been wanting to write this piece for a while and now I don't even know where to start.  I'll have to write my giant Autism Speaks post later since I don't have the time right now.

For now, I'm asking those of you reading this to write to Cafe Press and tell them how you feel about this.  If you have a Cafe Press store, especially one that has "autism" in any of the product titles, let them know you don't appreciate that you can't opt out of the money being donated to causes you don't support.  I will be boycotting Cafe Press until they issue an apology.  Autism Speaks isn't getting a dime from me until they stop treating all autistic people like tragedies that need to be fixed by brave, loving, non-autistic people, and they stop using fear tactics, stop spreading false information, stop threatening and harassing autistic bloggers, and start managing their money correctly.  Any organization that donates to Autism Speaks does not care about my patronage and is in fact supporting an organization that is openly hostile to my neurology.  I boycott them.  I advise you to do so as well.