More than Existing

On Monday, November 11, Suzanne Wright published a piece called "Autism Speaks to Washington—A Call for Action." In it, the Autism Speaks co-founder calls for a national plan to address this "emergency." "We are asking our leaders," she says, "to respond to autism with the urgency it deserves—NOW."

Many in the autism community are already strongly against Autism Speaks, and this piece did nothing to improve that reputation. Facebook lit up with angry remarks and several prominent bloggers in the community came out agains the piece. Even John Elder Robison resigned his positions at the organization.

AS has long been known to paint a bleak picture of autism, and the organization's goals tend to focus on finding a cure for autism. (I won't debate the need for a cure, for it is a long and heated road to travel.)

I have to be honest. At first I wasn't all that upset about the piece. First and foremost, Autism Speaks is a fundraising organization, and the way to raise money is to pull at heartstrings or to create a sense of panic. And so I assumed that the piece was just another way to raise money. I brushed it off.

But then I read it again.

And I read this line: "These families are not living. They are existing. Breathing—yes. Eating—yes. Sleeping—maybe...."

And that line, that we are not living but only existing, made me realize what all the fuss is about. Those are deeply hurtful words. Words that say that autistic people merely exist. Words that tell me that I can never be happy as long as my child has autism. And that is unfair and offensive to autistic people and those who love them.

Does the end, raising more money, justify the means, especially if the means alienates the very group of people you are purportedly trying to help?

No.

I've had a tough road with my son. He is the kid Ms. Wright describes in her piece. He often doesn't sleep. He bites people. He's been failed by our school system.

But he is my son. I love him. And if I am unhappy about our situation that is on me. That is not his fault. And if you make it his fault, if you tell me that I cannot be happy as long as he is my son, that we can only merely exist in this life, that leads to very dangerous thinking.

That leads to people who think it is okay to bully people with disabilities.
That leads to school systems who think it is okay to let our kids fail as long as they meet their bottom line.
That leads to media portrayals of autistic people as violent.
That leads to parents who act out of desperation.

So yes, we do need a national plan. But it has to start with hope. It has to start with the assumption that our autistic friends and family members are intelligent people with inherent value to their lives. Let's talk about education. Let's talk about accommodation. Let's even talk about the causes of autism.

But don't tell me I can't be happy. Because I'm not listening.
- - - - - - - - - - - - - - -
Jen also writes on her personal blog, Anybody Want A Peanut?