I’m thrilled that @refinery29 asked me, an #ActuallyAutistic journalist, to write about the ableism implicit in Sia’s upcoming film Music. #SiaDoesntSpeakForUs https://www.refinery29.com/en-us/2020/11/10183141/sia-music-trailer-maddie-ziegler-autism-speaks-controversy

Thank you @catquinn and @atthecrosswalk infinitely!

One tiny thing that understandably got cut from the draft was a mention that this issue is also VERY common with trans roles being played by cis people (often with no trans folks being consulted). It causes similar transphobic harm and stereotypes.

I’m partially nonverbal. When I was younger, I was nonverbal and then semi-verbal, often using AAC to communicate like we see Music’s character do in the trailer. That’s something that is VERY hard for me to talk about because of how stigmatized and stereotyped NV autistics are.

My inner world is also very similar to the inner world that is portrayed in the trailer—colorful, whimsical, with music and dance numbers. I believe a film like this could have been wonderful if only more autistic people were hired to be involved.

In particular, a nonverbal autistic should have been cast to play Music. There are nonverbal actors out there. Nonverbal folks and people who use AAC are so often put into boxes and assumptions are made about our abilities.

That’s why I don’t believe in functioning labels. I was diagnosed as “low-functioning.” Medical professionals and teachers told my parents I would never live independently and might not finish high school. That’s making assumptions, not giving someone autonomy.

Functioning labels are essentially useless. Because I’m a published journalist, people I’m assume I’m “high functioning.” If you heard that sometimes I use symbols or text to tell my wife something because I can’t speak, you would assume “low functioning.”

Both of those things can be true about one person at the same time; making those labels inconsistent and more harmful than useful. It’s something I’m often terrible to speak out about because of internalized ableism and discrimination.

It’s something I’m often terrible to speak out about because of internalized ableism and discrimination. I’m terrified of losing opportunities because I’m perceived at a certain level of functioning or ability. Sia’s responses show just how often this happens to us.

That’s exactly WHY we need to see films about nonverbal autistic people—and autistic people across the board—by us. It matters because these representations have a real impact on how we’re perceived by society. It’s often someone’s first or only exposure to autism.

There are a bunch of typos here because I’m having some trouble with communication this morning. That’s on being autistic! I just want to say everyone’s support and sharing means the world to me.