The road to ableism has always been paved with good intentions.
Last week, Sia posted a trailer for her upcoming movie, “Music.” According to a press release, the “Chandelier” singer co-wrote the screenplay and directed the musical drama, which stars Maddie Ziegler, Kate Hudson and Leslie Odom Jr. Sia also released a 14-track album to accompany the film, titled “Music - Songs From And Inspired By The Motion Picture.”
The film follows Hudson’s character, who is estranged from her family but suddenly finds herself the sole guardian of her nonverbal autistic half-sister, played by Zeigler. The two sisters also strike up a friendship with their neighbor, played by Odom, according to Variety.
Yet despite the seemingly feel-good content, upon the release of the trailer, many in the disability and autism community expressed concerns on social media.
One criticism is that Sia cast Ziegler — an 18-year-old dancer who has starred in several of the Australian pop star’s music videos — as the lead. Ziegler is neurotypical, and many in the autistic community took issue with the dancer portraying a nonverbal autistic teenager.
“There’s a lot to be concerned about with this film, including ― but definitely not limited to ― the casting,” Zoe Gross, director of operations at the Autistic Self Advocacy Network, told HuffPost via email. “We’re concerned about what messages the film will send about autism.”
“It’s sad to see people investing so much time and money into this outdated approach to telling stories about autism, when there are so many better ways to do it,” she said.
Gross also pointed out that the “focus on guardianship is extremely concerning,” especially if the autistic character in the movie is of legal age.
“Families of young adults with disabilities are often steered towards guardianship, which involves removing a person’s legal rights,” she explained. “Alternatives to guardianship, such as supported decision-making, can be used to help people with all levels of support needs, including nonspeaking autistic people, retain their legal rights while still receiving supports in adulthood.”
“These alternatives to guardianship are crucial for helping people with disabilities live happy, self-determined lives, but are often not known about, and this film may represent a missed opportunity to educate people on this subject.”
“It’s sad to see people investing so much time and money into this outdated approach to telling stories about autism, when there are so many better ways to do it.”
The entertainment industry has long struggled with the authentic representation of people with disabilities. Films and TV shows have traditionally depicted them as objects of inspiration or pity — which contributes to harmful stereotypes that continue to marginalize them. In 2016, only 2.7% of characters in the 100 highest-earning movies were disabled, according to a report from the University of Southern California’s Annenberg School for Communication and Journalism.
Film and TV have also perpetuated the harmful trope that autistic people are savants (think: 1988’s “Rain Man” or the most recent hit, “The Good Doctor”), which contributes to the cultural belief that someone with a neurotypical disability is a burden unless they have some kind of superpower.
Another factor that many in the autistic community were troubled by was that Sia consulted with the organization Autism Speaks for her film.
Autistic people have criticized Autism Speaks for years over its controversial messaging, including a resource on its site called the 100 Day Kit for parents of newly diagnosed autistic children. According to ASAN, the kit encourages parents to blame family stress on their autistic child and to spend time with their non-autistic children remembering how things were better before their sibling’s diagnosis. ASAN also notes that the kit encourages families to go through the five stages of grief after learning that their child is autistic, which ASAN characterizes as being akin to acting “as they would if the child had died.”
Gross also noted that Autism Speaks is “an organization without autistic leadership whose advocacy priorities are in opposition to the autistic community.”
Also alarming was Sia’s responses to people’s concerns.
When one Twitter user asked Sia why she cast a non-autistic actor for the lead, she lashed out by listing the neuroatypical and trans people she had cast in her film.
“I cast thirteen neuroatypical people, three trans folk, and not as fucking prostitutes or drug addicts but as doctors, nurses and singers,” she tweeted. “Fucking sad nobody’s even seen the dang movie. My heart has always been in the right place.”
This response didn’t go down well.
“So, you got out your ‘token quota’ card when casting?” Dominick Evans, a disability advocate, responded on Twitter.
“We are not objects to be counted to ‘prove you are diverse.’”
Another Twitter user pointed out that’s Sia’s attempt at subverting disabled stereotypes also comes off a bit misguided.
“Should all autistic &/or trans people aspire to be doctors, nurses or singers - are we only valid then?” they asked.
Sia told another Twitter user that she felt that casting an autistic person with her character’s “level of functioning” was “cruel, not kind, so I made the executive decision that we would do our best to lovingly represent the community.”
Although some may think this “executive decision” was pragmatic, Gross said ASAN was “alarmed” that Sia thought that casting a nonspeaking autistic actor would be “cruel.”
“It suggests that she thinks that autistic people don’t understand our own lives and aren’t the people who should be telling our own stories,” Gross told HuffPost. “When people tell stories about autism that cut out an autistic point of view, when storytellers view us as objects to tell inspirational stories about, or when autism is treated as a narrative device rather than as a disability community full of real people, the stories that are told fall flat, don’t speak to our reality, and are often harmful to us.”
When another Twitter user asked if Sia had done any research or consulted the autism community at all, she responded: “Duh. I spent three fucking years researching, I think that’s why I’m so fucking bummed.”
Yet in the course of the research, it seems she never stumbled upon one of the many online critiques of Autism Speaks. Sia said the controversial organization came on board to consult “long after the film was finished.”
A Twitter user appears to have warned Sia about Autism Speaks earlier this year.
Sia even went as far as telling an autistic actor that “maybe you’re just a bad actor” when the actor tweeted that her reasons for casting a neurotypical actor to play an autistic teen were merely “excuses.”
Alaina Leary, an autistic writer, wrote in Refinery 21 that Sia’s rude remark to the autistic actor only adds “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.”
Leary also pointed out how Sia’s assertion that casting an actor with the character’s “level of functioning was cruel, not kind,” and shows “how little research she has done on autistic people.”
“Describing someone as low-functioning and making assumptions about their abilities based on how they communicate is ableist, not kind,” Leary wrote.
Gross added that her organization had consulted with the team that made Pixar’s movie “Loop” and offered an example of how autistic actors could be included in narratives involving their lives.
“They brought on a nonspeaking autistic voice actress, Madison Bandy, to play a nonspeaking autistic character,” Gross explained. “And they modified their recording process to allow her to participate in a way that worked for her.”
Gross added that autistic people often need accommodations for work, including in the entertainment industry, “but that doesn’t mean that we are not worth hiring or including.”
“It’s deeply disappointing to see Sia using her platform to attack autistic people who’ve spoken up about their concerns about the film,” Gross concluded to HuffPost. “When you speak over a marginalized community to tell their story without their input, people will object to that.”
“If Sia truly wants to be an ally to the autistic community, she’d listen to the feedback she’s getting and learn from autistic people about how we want to be represented.”
Sia did not immediately reply to HuffPost’s request for comment.