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“Nothing about us without us” is a common saying in the disability community that traces back to South African disability rights activists in the 1990s. It’s more than a phrase, it highlights how common it is for disabled people to be excluded from conversations about our own civil rights, healthcare, and media representation. Parents of disabled children often carry more weight as experts on disability than disabled people do, and most film and TV roles for disabled characters cast a nondisabled person to portray them.

Sia’s upcoming film Music is just another example in a long history of autistic people not being centered in stories about autism. The film and Sia are currently facing criticism for casting Maddie Ziegler, a non-autistic actress, in the titular role of Music, a nonverbal autistic character who moves in with her recently sober sister (Kate Hudson). Ziegler and Sia are known for frequently working together, but it’s a disappointment to see yet another neurotypical actor playing a neurodivergent role. 

It’s even more disappointing that Sia has doubled down in response to criticism from autistic and disabled advocates. In contrast, Anne Hathaway recently apologized for her character’s hands in The Witches after disability advocates spoke out about the implicit ableism and the potential impact on children with limb differences. But Sia’s choice to react in anger rather than reflect on her role in perpetuating ableism and autistic stereotypes, however well-intentioned, shows that she’s not ready to truly listen to autistic people, even though she says she based Music on one of her friends, had two autistic people advising her on the film, and cast 13 autistic people in the film. If she can’t even listen to our community’s criticisms, why should she direct a film about us? 

Hiring a non-autistic actor to portray a canonically autistic character, or an undiagnosed character who is strongly coded as autistic, is common, but that doesn’t make it acceptable. Abed (Danny Pudi) from Community, Sam Gardner (Keir Gilchrist) from Atypical, Dr. Shaun Murphy (Freddie Highmore) from The Good Doctor, Isadora Smackle (Cecilia Balagot) from Girl Meets World, and Sugar Motta (Vanessa Lengies) from Glee are all portrayed by non-autistic actors. This happens across the board with disability. Superstore’s Garrett is played by Colton Dunn, who isn’t a wheelchair user like his character. 

Often called “cripping up,” this practice can lead to stereotypical and harmful portrayals of disability, such as Sam Claflin’s role as Will Traynor in Me Before You, which suggested that death was better than living with a disability. Hiring nondisabled actors also takes away disabled roles from disabled actors. Ableism is rampant in the film and TV industry, and it’s very difficult to get your start as a disabled actor when famous directors discourage actors from even sitting down to take a break during filming. According to GLAAD’s 2019 “Where We Are On TV” report, only 3.1% of characters on TV are disabled, and 95% of characters with disabilities are played by able-bodied actors. 

Maybe you’re just a bad actor.

— sia (@Sia) November 20, 2020

When people suggested to Sia that autistic actors should have been considered for the role of Music, Sia replied “Maybe you’re just a bad actor” to an autistic actor, adding to the prevalent assumption that autistic people are unable to act because we’re not neurotypical, which ignores the incredible diversity of the autistic community. Sia went on to suggest that casting someone at Music’s “level of functioning was cruel, not kind,” showing once again how little research she has done on autistic people. The autistic community has been outspoken for years about the need to do away with functioning labels. Describing someone as low-functioning and making assumptions about their abilities based on how they communicate is ableist, not kind. I should know, I was marked as “low-functioning” by medical professionals when I was diagnosed as a kid and was partially nonverbal growing up. How someone communicates with the world around them is not indicative of their personhood or their right to make choices about their own life, including pursuing acting as a career.

As an autistic person, I know that no matter how good an actor is, they will never know exactly how it feels to stim by flapping your hand lightly against your leg because you’re overwhelmed or energized at a busy work conference. They can try to act the challenge of making eye contact, but it’s more likely to be a stiff, stereotypical portrayal, because the reality is that it’s not as simple as Googling autistic traits and copying them. Sometimes eye contact makes me uncomfortable, especially during emotionally charged conversations. Other times, I find it comforting, and could gaze into my wife’s eyes for hours while she talks about books. Living as an autistic person is infinitely more complex than meeting a set of diagnostic criteria. Contrary to popular media representation, many autistic people — myself included — are actually primarily sensory-seeking instead of sensory-avoidant. I find loud music, strobe lights, and crowds energizing and deeply joyful, despite what mainstream media representation of the autistic experience suggests. 

Researching autism involves talking to autistic people. Of all genders, sexualities, cultures, races, religions, ages, with and without learning difficulties, those with high and low support needs. It does not involve reading information about us written by non-autistic people.

— Emily♡ (@ItsEmilyKaty) November 20, 2020

Famous person: Well how was I *supposed* to represent a condition I don’t have, then???
Everyone [whispers]: You weren’t.

— Kaitlyn “the mask goes over your nose” Blythe (@BlytheByName) November 20, 2020

Music seems to lean on some existing tropes and myths about autism. The film’s trailer portrays Music as a nonverbal teenager who uses augmentative and alternative communication (AAC). Without viewing it in its entirety, it’s impossible to judge the full movie, but the perspective of the trailer makes it apparent that, like a majority of movies about autistic characters, audiences are not meant to empathize with Music or other autistic characters — we are meant to see things from the perspective of her sister Zu. 

The trailer begins with Zu speaking and shortly after, her friend Ebo (Leslie Odom Jr.) tells her that Music “can understand everything you are saying to her” and that “she sees the world in a completely different way from us.” Zu is the lead role in this movie, and Ebo seems to be the link that forces her to rethink her relationship with Music. Therefore it can be assumed that the audience is not meant to experience the events of the movie from Music’s point of view. Instead, the audience is primed to take Zu’s perspective: Autistic people are outsiders and their worldviews are automatically othered, even when those autistic people are close to us and we love them deeply. A whimsical, colorful dance sequence in the trailer shows us how Music sees the world. A movie that wants us to understand and empathize with Music will hopefully go further, offering us more of Music’s perspective on her world, how she feels, what she’s thinking, and what’s important to her. She will be more than just energetic musical numbers that remind us she’s different; we’ll have the ability to get to know her as a flawed, fully-developed character.

Autism speaks came on board long after the film was finished, four years in fact. I had no idea it was such a polarizing group!

— sia (@Sia) November 20, 2020

The tropes surrounding Music’s portrayal aren’t surprising considering the film consulted Autism Speaks, an organization heavily criticized by the autistic community for many examples of harm, including its long-time focus on finding a cure rather than supporting living autistic people. Sia claims she had no idea the group was so polarizing, which again just reassures the autistic community how little research she and her team did into autism. Her responses aren’t comforting and do nothing to persuade me that I need to give the full film a watch before judging it, considering Sia wasn’t even willing to do the same for autistic actors. 

Music is shaping up to be a movie that completely ignores the rallying cry of, “Nothing about us without us.” This is clearly a movie by non-autistic people for non-autistic people, just like the vast majority of mainstream media. That’s not representation. Music is commodifying and profiting off ableist assumptions about autistic lives. 

Refinery29 reached out to the Music team, as well as Sia, Ziegler, and Hudson for comment and will update this story if we hear back.

Voices of Disability is edited by Kelly Dawson, a disability advocate who was born with cerebral palsy. She has spoken about her disability on the popular podcast Call Your Girlfriend, and written on the subject for Vox, AFAR, Gay Mag, and more. Find her work at kellymdawson.com. 

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Alaina Leary, Khareem Sudlow