“I am my daughter’s voice. I will never apologize for that.”
By Jaime Capone
Omfg - sorry I have to vent.
I don't understand a community so hell bent on erasing an entire part of its own community. It's like if cancer awareness one day decided bone cancer didn't belong and was offensive to all other cancers. That is what it feels like to live life in the severe world of autism.
Nobody wants us. Neurotypical people certainly don't want anything to do with us. The medical community acts as if we don't exist (they don't know what happened and they sure as fuck won't treat us — we're not even allowed in their offices).
And now we have another example of our own autism community shutting us out. The autism community is really up in arms over's Sia's film which portrays a severely affected, non verbal girl with autism. [Editor’s note: See this commentary by NCSA’s president on this issue].
There are so many things that make me happy about that sentence. They're showing someone on the severe end? YAY! They're showing a girl???? OMG YAY! But no — it needs to be "canceled" it's "ableist" it's "offensive."
Here are what seem to be the big reasons people are upset (1) They didn't have someone with autism play the role. REALLY? hmmm - how do you feel about movies that portray people with dementia? I hate to break it to you but the actors actually don't have dementia. Do you know why? BECAUSE IT WOULD BE FUCKING IMPOSSIBLE TO SHOOT THAT MOVIE! Should we have actual corpses playing dead people? Maybe we should force actors to throw up if they play someone with bulimia? Can we get real zombies to play zombies? I could go on and on...
(2) I guess there were scenes using restraints during a meltdown which Sia has had to remove. What unicorn and rainbow world do you live in where you think non verbal people with autism during a meltdown are not restrained? I'm not saying it's right. It's not right. It's horrible. But it happens every day. It happens in the most reputable expensive private schools and day centers and group homes and hospitals and EVERYWHERE. DAILY. Sometimes until the person dies. Do we extinguish all images of cops restraining people? Why not??? It's not right! Maybe if we stopped showing it - it would go away? (SAID NO ONE EVER)
I guess Sia has issued an apology. Because apparently that's what you have to do if you show someone with autism doing anything other than "making the shot at the big game!" or being named "king of the prom by his awesome neurotypical friends!" Sia has called herself an Ableist and said she's learned her lesson. I'm saddened by the takeaway which is don't show anything negative associated with Autism. That's just not the autism I know.
Why is it so hard for the disabled community to recognize that there are levels of disability? The severe community is not trying to take anything away from people on the spectrum who have the ability to live in this world and advocate for themselves. We wish you well. We are happy for you.
But to act as if there is not a faction of us who CANNOT. Who NEVER WILL be able to navigate this world without 24/7 help — that's just crazy.
We exist. I am not an ableist. I am my daughter's voice. I will never apologize for that.
Jaime Capone is the mother of a daughter with autism. She lives in Southern California.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.
